staR tRekkeRs - Muscular Dystrophy Campaign
Transcript of staR tRekkeRs - Muscular Dystrophy Campaign
latest ReseaRch FundRaising news eXPeRt advice RegiOnal ROund-uP
For support Tel: 0800 652 6352 Email: [email protected]: www.muscular-dystrophy.org
staR tRekkeRshow four people challenged the wild in the name of charity
undeFeated living with duchenne
muscular dystrophy at the age of 40
the haRdest wORdstalking to children about their condition
Spring 2008 Leading the fight against muscle disease
www.muscular-dystrophy.org
Welcome2008 is going to be a huge year for your charity as we deliver more of what you want and need. You can read about recent successes further on in this issue, but keep an eye open for new developments this year including:Family weekends this autumn; after a number of years’ success in Northern Ireland, these are
now coming to Great Britain. Better research communications – finding out what is happening in research is hard work. We will make it easier through our website, TargetMD and new publications including e‑newsletters. Regional campaigning – as well as working with the NHS nationally, we are also working with the Health Commissioners in the regions. Campaigning groups to improve services are setting up in Wales, the South West and elsewhere. More will follow. Children’s network and website – due to launch this autumn, this will be a fun way for children with muscle disease to learn and play together. And this is only the tip of the iceberg. None of this would be possible without your support and encouragement. Thank you very much for everything you have managed to do, both big and small, that has taken us to where we are. Together we are stronger.
Philip Butcher, Chief Executive
4 newsNew clinical trials for boys
8 stRategic Review Our feedback on progress this year
10 camPaignParliament responds to a damning report on care services
12 inteRviewAndréa Childs talks to author Jonathan Colchester
14 liFestyleIntrepid fundraisers journey far and wide
18 ReseaRchProfessor David Beeson on Myasthenia Gravis
23 awaRd winneRsChildren of the Year
24 caRe suPPORtTalking to children
28 FundRaisingWhat’s been going on near you
31 get invOlvedWays you can help
32 ask evaOur expert answers your questions
34 sOaPbOX Voice your views
36 buyeRs’ guideWhat not to wear
38 ResOuRces Guide to support services
contents SPRING 2008
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The Muscular Dystrophy Group of Great Britain and Northern Ireland 61 Southwark Street, London SE1 0HL. Registered Charity No. 205395
For advertising enquiries: Steve [email protected] / 020 7878 2300
For corporate opportunities: Michelle [email protected] / 020 7803 4819
For all other enquiries: Ingrid Ambrose [email protected]. If you would like to contribute to Target MD, send your copy by 20 April 2008Disclaimer While every effort has been made to ensure the information contained within Target MD is accurate, the Muscular Dystrophy Campaign accepts no responsibility or liability where errors or omissions are made. The Muscular Dystrophy Campaign does not necessarily endorse the products advertised and no responsibility can be accepted for claims made by the advertisers. The views expressed in this magazine are not necessarily those of the charity. ISSN 1663-4538
Published on behalf of the Muscular Dystrophy Campaignby Engage Publishing Ltd www.engagepublishing.co.uk
The magazine for supportersof the Muscular Dystrophy Campaign
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hOw tO dOnateTo make a donation to the Muscular
Dystrophy Campaign, contact us:
• Muscular Dystrophy Campaign, 61 Southwark Street, London SE1 0HL
• Tel: 020 7803 4800
• Email: [email protected]
• Web: www.muscular-dystrophy.org
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news
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A NEW CHILDREN’S MICROSITE reached via
the MDC website is set to launch in
September, thanks to a generous donation
from Schroders Plc. This will be a secure
place for children with muscle disease to
learn, play, interact and feel part of a
wider community.
Watch this space for progress updates. In
the meantime, a big thank you to Schroders
Plc for making it possible for us to provide
this new way for young people with muscle
disease to connect and be creative.
* Are you aged between 6 and 16? Tell us
what you would like to see on a website
designed just for you. If you’d like to take
part in a focus group looking at the
website as we work on it, or would like to
provide content to go online, contact
Abby Mardon on 020 7803 4806 or
space for youth online
A uNIquE INITIATIVE to give people with
muscle disease access to education and
employment at home was set in motion in
December at the NeuroMuscular Centre in
Winsford, Cheshire.
Launching the Home Study and Home
Working project, Shadow Minister for Health
and MP for Eddisbury, Stephen O’Brien, said, “I
am delighted to be launching this Home Study
and Home Working project, which will offer
people with muscle disease, from all across the
country, the opportunity to gain greater
independence and future employment.”
Matthew Lanham, Executive Director of the
NeuroMuscular Centre, said, “I hope we will be
able to extend our services to hundreds of
people who have difficulty in travelling far and
wide for training.” The project was made
possible by funding from Bank of America and
the Morgan Foundation.
unique Way to Work anD stuDy
LOCAL POLICE and the town crier assisted in
the mock arrest of eight Chester business
managers, with a further 12 expected to be
detained on 12 March in Ellesmere Port. Each
‘felon’ was handcuffed at their place of work
and led away to a waiting police vehicle, then
had their fingerprints and mugshots taken. To
ensure release, each felon was required to
raise a minimum of £500 bail money prior to
the event. They were then treated to a
champagne lunch by local French restaurant
Chez Jules. The Lord Mayor and Lady
Mayoress were in attendance and the event
was covered by the local press. The two parts
of the event are expected to raise in excess of
£10,000 for Muscular Dystrophy Campaign.
arresteD for charity
Hear ye! Hear ye! You’re nicked in the name of charity!
GOOD LuCk TO ALL
110 members of our
fantastic London
Marathon team who
will be participating in
the world’s most
popular marathon on
13 April. The dedicated
and inspirational
fundraisers have been training through the
winter to make their muscles count for the
Muscular Dystrophy Campaign. Come and
show your support on the day at one of the
Muscular Dystrophy Campaign cheering points.
We will be based at Tower Bridge and
Parliament Square (look for bright orange
clothes and balloons).
let’s hear it for marathon heroes
PTC THERAPEuTICS, a uS‑based
biopharmaceutical company, is initiating a
multi‑centre clinical trial to test its
investigational drug, called PTC124. The drug
could help boys with Duchenne or Becker
that carry a certain type of mutation called a
“nonsense mutation”. Around 10 to 15 percent
of boys have this type of mutation, which
prevents production of dystrophin, the
protein that is missing in the muscles of
affected boys. Three sites in the uk are
planning to participate in the trial.
neW clinical trial for boys With nonsense mutations
A NEW NEuROMuSCuLAR CENTRE providing
services for people with muscle disease is to be
established in Newcastle. The city was chosen as
the site of NMC2 because of the world‑leading
expertise in muscle disease at its Centre for Life.
This is where the Muscular Dystrophy Campaign
muscle centre is located, with an internationally
renowned clinical team led by Professor kate
Bushby and Professor Volker Straub. An initial
grant of £78,000 has enabled the project to get
under way. Links have been forged with a range
of educational and business organisations that
seconD centre is unveileD
will be crucial in making the Newcastle NMC a
worthy replica of the existing centre in Cheshire.
Other locations were considered for the new
centre and we hope very much to continue to
work in those areas and to build a national
network of NMCs.
At the heart of the NMC in Cheshire is a Social
Enterprise and Training Centre providing work
and training opportunities for people with
muscle disease. The Centre also provides
physiotherapy, hydrotherapy and a range of
support and advice. This is the exciting and
powerful model we plan to replicate.
For more information, contact Matthew
Lanham on 01606 861733 or email
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news
TRANSLATIoNAL CoNFERENCESee page 20 for news from Muscular
Dystrophy Campaign’s recent Conference
on translational research, attended by
scientists and clinicians from around the
world as well as patients’ groups. To
download a conference podcast, visit
www.muscular-dystrophy.org/research
SPoNSoR FoR YouNG PAvEMENT ARTISTSWe are pleased to announce that
GlaxoSmithkline will be sponsoring the
Young Pavement Artists Competition for
2009. The competition, to be launched in
September this year, will continue to raise
money for Muscular Dystrophy Campaign.
LAuNCH oF YouNG PEoPLE’S NETWoRk Vinvolved, the national youth volunteering
programme has awarded £250,000 to the
Muscular Dystrophy Campaign, to set up
regional networks of young people with
muscle disease. Turn to page 11 to find out
how you can get involved in campaigns in
your area.
SIGN uP FoR ouR NEWSLETTER The Muscular Dystrophy Campaign sends
out a monthly e‑newsletter with updates
on our research, events and activities. You
can sign up online by going to the web
address below and clicking on the link in
the top right corner of the page:
www.muscular-dystrophy.org/
newsletter. Your email address will never
be passed to a third party and you can
unsubscribe at any time.
neWs in brief run for muscles leaps aheaD
A uk‑WIDE RACE SERIES called Run for
Muscles has been launched following the
success of running events organised by the
Muscular Dystrophy Campaign.
We want to raise significant funds as well as
engage with the running community via new,
challenging and top‑class events.
The Muscular Dystrophy Campaign Race
Team is led by Anne Jackson, regional
fundraising manager for Anglia, who has
extensive expertise in this area. Her work will
be underpinned by the enthusiasm of local
branches, and of the friends and families of
people with muscle disease taking part as
wheelchair‑using participants, marshals and
committee members. The commitment of
people with neuromuscular conditions to our
current races, such as the Oxford Town and
Gown, has made these events hugely popular.
Anyone can support Run for Muscles. Why
not take part in a Fun Run in your area? For
more details, call Anne Jackson, National Race
Manager, on 01787 313913 or email
JAY kuMAR, who works as a Terminal 5
Project Manager for British Airways, has given
£2,000 to the Muscular Dystrophy Campaign.
Jay donated the money after being
recognised by the British Airways
Community Relations team for his charitable
endeavours over the past 10 years. He was
presented with a Community Volunteering
Award and a cheque for £2,000 at a special
ceremony with television presenter Ben
Shephard. He immediately passed on the
money to the charity.
Jay previously raised £600 for the Muscular
Dystrophy Campaign in 2006, with a
Bollywood song supporting the England
team during the World Cup. The song was
inspired by Jay’s teenage daughter, Anjali,
who has a form of muscle disease. As a long‑
time supporter of our work, Jay said, “I am
delighted to have been able to make a
significant contribution to the work of the
Muscular Dystrophy Campaign.”
We would like to thank Jay and British
Airways for their generosity.
airline Donor flies in to give £2,000
Jay kumar donates his award to MDC
travel insurance for peace of minDTHE MuSCuLAR DYSTROPHY CAMPAIGN has
launched a new partnership with unique, a
company that is now offering travel insurance
and life assurance products for people with
muscle disease, their families, friends and carers.
The policies are quick and easy to purchase,
with no referrals for medical screening and no
age limits on single‑trip policies. For a quote or
more information, call 01603 828218 or visit
www.muscular-dystrophy.org/insurance
on your marks: Anne Jackson
heads the Race Team
news
� targetmD For support call 0800 652 6352
t he power of art to reflect the lives of
people with muscle disease was
demonstrated this January in the first
exhibition curated by the Muscular Dystrophy
Campaign, Perspectives on Muscle Disease: Life in
Pictures. The show at London’s Novas
Contemporary urban Centre featured paintings,
photographs and an installation by artists
including one of Britain’s most acclaimed
portrait painters, Jonathan Yeo. Muscular
Dystrophy Campaign Honorary Life President,
Lord Walton of Detchant, who was painted by
Yeo, said: “I am delighted to be a part of this
exhibition. I could not be more excited about
the future of the organisation, but above all
about the developments which carry such
outstanding hope for our patients and
their carers.”
The charity’s Patron HRH Prince Philip Duke of
Edinburgh and Honorary Life President Lord
Richard Attenborough (right), were also painted
by Yeo who was commissioned by the Muscular
Dystrophy Campaign thanks to a private
donation. “It has been a privilege to meet and
paint these three men, who have done so much
to help such an important cause,” Yeo said. Lord
Attenborough was certain that the exhibition
“will raise awareness of our cause. It has been a
privilege to meet the parents and families who
have dealt with muscular dystrophy and
witnessing the depth of their utterly selfless
love has made a lasting impression upon me. I
shall be ever grateful to the Muscular Dystrophy
Campaign for granting me that privilege.”
A personal storyDocumentary photographer Lesley McIntyre
exhibited The Time of Her Life, a photographic
biography of her daughter Molly (below), who
died of an undiagnosed form of muscle disease.
In the first few days of Molly’s life a biopsy
revealed an abnormality in the formation of her
muscles. McIntyre was told that her daughter
was unlikely to survive more than a few months.
In fact, Molly lived an inspiring life until she was
14 and the work on show includes 52 poignant
images of her. “I am delighted that the Muscular
Dystrophy Campaign invited me to participate,”
McIntyre said. “Molly and I were in regular
contact with the charity and received invaluable
support from a Regional Care Advisor.”
Although the images of Molly are personal,
McIntyre hopes they will speak to other parents
who have a disabled child. “I have met many
children and their parents facing similar
problems,” she said. “Although I realise that the
story revealed in this set of photographs is
about one human being, I hope the work
resonates for all of those who know and
understand the enormity of the issues that The
Time of her Life attempts to address – those of
attitudes to disability and child mortality.”
Family connectionsThe final exhibit came from Jacqueline Donachie,
one of Scotland’s most‑respected contemporary
artists. Her sister’s second child was diagnosed
with congenital myotonic dystrophy at birth and
it was revealed that her family had myotonic
dystrophy on her father’s side. Donachie’s
installation work, Tomorrow Belongs to Me, is the
result of a five‑year collaboration with Professor
Darren G Monckton of the Institute of Biomedical
and Life Sciences at the university of Glasgow. It
uses photography, sculpture and film to look at
the phenomenon of anticipation in certain forms
of inherited genetic illness, in particular the
decreasing age of onset of the symptoms from
one generation to the next, observed in
disorders such as myotonic dystrophy.
She explores the ideas of scientists and
clinicians whose work has proved pivotal in
establishing anticipation as a true biological
effect. Donachie also presented DM, a
photographic and text‑based study about
myotonic dystrophy.
“I am delighted to lend my work for this
exhibition,” she said. “It is an opportunity to
highlight the need for continued research into
muscle‑related illness and the work the
Muscular Dystrophy Campaign does.”
To read the full article, go to www.muscular-
dystrophy.org/news/
Picture thisArt exhibition puts muscle disease in the frame
Artist Jonathan Yeo with Honorary Life President
Lord Richard Attenborough beside Yeo’s portrait of
Lord Attenborough
Lesley McIn
tyreJacq
uelin
e Do
nach
ie
Benedict Cumberbatch (left) as novelist Alexander Masters and Tom Hardy as his friend Stuart Shorter, in the BBC film drama
� targetmD For support call 0800 652 6352
CAREobjective: Empower those living with
muscle disease through self-management
and self-care
We held seven Information Days and three
Family Fun Days, 10 education and training
days for professionals, plus our first Occupation
Therapy (OT) Conference. Our packs for adults
managing their condition are due to be
launched in Summer 2008. We have updated
the Muscular Dystrophy Campaign Information
Pack. There are also new publications: Guide for
families with a child newly diagnosed with a
muscular dystrophy, a Guide for those with a
child diagnosed DMD age 5-12 years and five
new factsheets.
Trailblazers, a peer‑to‑peer group for young
people, has been set up in Northern Ireland.
MDC directors attended eight patient group
conferences and funded or part‑funded a
Support Group training day for CMT members,
a conference Information & Support day for
the OPMD group and the FSH annual
conference. We also invited all of the Groups to
two meetings in London. Spending on welfare
grants increased by 10 percent to £132k.
Scottish Chair Stephen McDonald and family meet Deputy Minister Nicola Sturgeon (centre) and actor Eileen McCallum
“we now have 334 registered patients; up 12 percent on the year before”
Facing the challengesLast year we invited Muscular Dystrophy Campaign supporters to have their say as part of our Strategic Plan, mapping out our beliefs and goals in our fight against muscle disease. Here’s our feedback on what we have achieved and what we still need to do
Clinical & Care servicesobjective: Work in partnership with
healthcare professionals to ensure those
living with muscle disease receive the
highest quality of care available
We have continued to support muscle centres
with an audit of muscle centre grants planned
by the new Clinical Research & Care Committee
for 2008‑09. We have invited our previous
research fellows to our symposium in 2009.
Continuing to develop our Care Advisor
network, we have agreed joint funding with
with the NHS for a new Birmingham Care
Advisor post. We have funded information days
for families and training days for professionals
in South Wales.
Spending on Clinical Research grants
increased from £354k p/a to £377,596 with
four out of the six applications successful.
Best practice developmentWe are continuing our programme of
symposia and workshops with the next
symposium planned for 2009. We have
distributed our Wheelchair Guidelines to
therapists, training colleges and universities
and we have updated and reprinted our
Education Guidelines in response to demand.
We now have an OT network with more than
120 people and more than 100 delegates
attended our first Occupational Therapy
Conference. Our care team will be at the
Naidex homecare, disability and rehabilitation
event in April to meet therapists.
As part of our work towards developing
minimum best practice guidelines, we held a
workshop with young people to identify
several areas of concern.
Clinical data has been captured for over 100
Duchenne muscular dystrophy patients via the
NorthStar patient group. Support to TREAT‑
NMD by funding cost of part‑time uk
Implementation Manager.
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strategic review
www.muscular-dystrophy.org
NEuRoMuSCuLAR CENTRE objective: Home Working and Home Study
A long‑standing strategic aim of NMC was
fulfilled last year when this project secured
funding from Bank of America and a regional
trust, the Morgan Foundation. We are offering
up to 15 places for home study this year. We
have 10 home students already enrolled; the
level of interest sparked by the article in Target
MD has exceeded expectation.
objective: Growth in physiotherapy
service at NMC
Our aim has been to provide more treatments
for more people. We aimed to grow at 10
percent a year, which we have achieved. We
now have 334 registered patients; up 12
percent on the year before. We have provided
over 3,100 treatments in 2007; over 10 percent
up on the previous year. We continue to work
with NHS partners and commissioners to
ensure progress towards our goal of full cost
recovery for the physiotherapy service at NMC.
objective: NMC Newcastle
The goal was to support and nurture the
replication of NMC. We promoted the model
and the opportunity to interested groups
across the uk. We chose Newcastle to be the
first location and hope to explore others.
PoLICY AND CAMPAIGNSobjective: National specialised
neuromuscular service
We have urged the Department of Health and
the NHS to recognise the need for a national
specialised neuromuscular service. We are also
working at a regional level to underline the
gaps and weaknesses of the current national
services. We have taken a similar position in
Wales where services are weak in many areas
and have also raised concerns with the Scottish
Government. We will undertake work in
Northern Ireland, now that the devolved
Assembly has been re‑established.
objective: Action on “postcode lottery”
Working with individuals, families and
condition specific groups, we have
highlighted evidence from national surveys
and published data that shows how life
expectancy and quality of care are influenced
by a “postcode lottery” of services. This work
has been backed by leading clinicians. A
House of Commons launch secured press and
media coverage.
objective: Influence policy with focus
on transition
We have commissioned research to determine
how many people are affected by
neuromuscular conditions and we are working
to improve support for young people as they
move to adult services. We have secured a
major grant to develop the skills and
confidence of young campaigners.
objective: Campaign for new treatments
We have linked our call for a national network
of specialist neuromuscular centres to the
need to ensure that resources will be available
to undertake trials looking at potential new
treatments, taking research “from the
laboratory bench to the bedside”.
objective: Support individuals
We provide advice and support for individuals
who have difficulty in accessing services from
local councils and in education. We have also
addressed failings in healthcare working with
Regional Care Advisors.
RESEARCHobjective: Facilitate the formation of
scientific information platforms to
encourage interdisciplinary networking
over to youWhat are your views on what we’ve achieved? If you’d like to comment
on any aspect of our programme and future plans, please get in touch:
Philip Butcher, Chief Executive
• 020 7803 4801
We strive to facilitate communication and
collaboration between scientists and clinical
researchers to speed up the process of
transferring promising technology into the
clinics. The charity organised, in partnership with
MRC Centre for Neuromuscular Diseases, a
conference to provide updated information on
translational research. More than 300 clinicians
and scientists took part in this meeting,
including presentations from researchers
currently supported by the charity, as well as
other international experts.
objective: Invest in high-quality research
Fellowships aimed at addressing the cause,
cure and symptoms of muscle disease.
We will continue to invest in high quality
research projects. Plans have been agreed and
we are committed to spending over £1.5
million.To attract young scientists to work in
the field of muscle disease, studentships will be
available in the next grant round.
objective: Raise the profile and awareness
of the charity in the scientific community.
We continue to raise our profile within the
scientific community by participating at
scientific conferences and visiting our grantees
every year.
Activities at a family weekendFrom the bench to the bedside
campaign focus
For support call 0800 652 6352
Muscular Dystrophy Campaign has published a hard‑hitting report, which we launched in Parliament, on the uneven provision of care nationwide. Have your say and help us improve the lives of young people with muscle disease
Act now on inadequate care, lack of
specialists and poor services.” This was
the call for immediate action made by
the Muscular Dystrophy Campaign at an All
Party Group meeting in the House of Commons
in December. Launching a hard‑hitting and
damning report, Building on the Foundations: The
Need for a Specialist Neuromuscular Service across
England, we highlighted widespread failings in
the current provision of care for people with
muscle disease. The report revealed that
patients with muscle diseases are faced with a
fragmented, substandard system of care, with
significant variations in survival across England.
At the meeting in Parliament, we called on the
Government and the Department of Health to
recognise neuromuscular care as a specialised
service and to end the appalling postcode
lottery of access to treatment.
Local campaigner Steve Ledbrook, who lives
in the South West, has struggled to find
appropriate care to treat his Becker muscular
dystrophy. He met his local MP, John Penrose, at
the All Party meeting. Steve said: “After being
diagnosed with muscular dystrophy I found the
South West to be a desert for the treatment of
adults with conditions like mine.
“Expecting disabled people and their families
to travel long distances just to gain access to the
clinical care they need is shocking. Provisions
10 targetmD
the big stORy
damning report slams postcode lottery for care
The Ledbrook family with their MP John Penrose
Sheila Hawkins (right), Chair of the FSH Support
Group, meets former Health Secretary Patricia Hewitt at
the House of Commons launch
campaign focus
www.muscular-dystrophy.org
get in touchIf you would like to share any relevant experiences or if you
need the campaign team’s help or advice, please get in touch with Robert Meadowcroft using the contact details below.
Robert Meadowcroft
•020 7803 4848
In February, Muscular Dystrophy Campaign supporters heard from the First Minister, Rhodri
Morgan AM, when we lobbied the Welsh Assembly in Cardiff. Joining forces with the Genetic
Interest Group, we presented him with a major report, Building on the Foundations The Need for a
Specialist Neuromuscular Service across Wales. The report highlights the inadequate provision of
health services for people in Wales with muscle disease. The Muscular Dystrophy Campaign
plans to work with the Welsh Assembly Government, NHS Wales and the Health Commission
Wales on the issues raised, involving people with muscle disease, families and clinicians.
campaign round-upThe fight in Wales
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should be made to help us all receive necessary
treatment, not make life more difficult. I was
delighted to meet my MP, John Penrose. It is
really important that he recognises the
difficulties people with muscle diseases have in
receiving specialist care and support in our area.”
Professor Mike Hanna, co‑author of the report
and a Consultant Neurologist at the Institute of
Neurology, said: “Specialist care is essential to
improve the quality of life of patients with
neuromuscular disorders and yet it is not
available for many patients. Too often specialist
care is vulnerable and heavily dependent on a
handful of leading clinicians with a research
interest in this field, rather than embedded in a
properly resourced, long‑term service.”
Speaking at the meeting in Parliament, Philip
Butcher, Chief Executive of the Muscular
Dystrophy Campaign, said: “This report
illustrates the challenges facing Government,
the NHS and Commissioners. People with
chronic disabilities are living longer thanks to
medical advances, and yet local NHS services are
failing to meet this demand. It is essential that
the Department of Health recognise the
specialist nature of the care needed by patients
with neuromuscular conditions and ensures
that such services are available to all patients,
regardless of where they live.”
Next steps: taking Building on the Foundations forwardParliamentary Motion: We tabled a House of
Commons Motion calling on the Government to
improve services for patients with muscle
disease. The motion received support from 80
Members of Parliament.
Local Campaigns Network and Coalitions: We
are setting up coalitions in those areas we
identified as being the most poorly served – the
South West and the East of England.
These coalitions will consist of people living
with the condition, clinicians and Members of
Parliament. By working together, we can ensure
that we maintain momentum on this important
campaign and continue to put pressure on both
local and national decision makers. If you would
like to join one of our local coalitions, please
contact Elizabeth Hoyle on 020 7803 4846.
Working with the Department of Health and
local commissioners: We are also committed to
working with the Department of Health and
local commissioners to improve services across
England. We recently met with civil servants at
the Department of Health and also health
commissioners in the South West. They have
made a commitment to working with us.
For a copy of the report, Building on the
Foundations: The Need for a Specialist
Neuromuscular Service across England,
log on to www.muscular‑dystrophy.org and
search for the report title.
“expecting disabled people and their families to travel long distances just to gain access to the clinical care they need is shocking”
Lobbyists outside the Welsh Assembly
If you are aged between 16 and 30 and want to make a difference to the lives of people living
with muscle disease, get involved in our Young Person’s Campaigning and Information Network.
Launching later this year, the network is an opportunity to learn new skills and to help others. If
you feel strongly about a particular issue, such as treatment at schools, doctors’ services, or
getting the right wheelchair, the network will give you the chance to talk to other young people
in your region about these concerns. Together you will decide how you can improve the lives of
young people living with muscle disease. You will then organise your own lobby of Parliament –
that’s when the Government and Members of Parliament will listen to your concerns and see if
they can do anything to help. You will also be able to chat to others living in your region
through a brand new website.
If you want to get involved, please contact Nic Bungay on 020 7803 4847 or email
Join our new youth network
interview
12 targetmD For support call 0800 652 6352
Jonathan Colchester is 40 and has Duchenne muscular dystrophy. He talks to Andréa Childs about his remarkable life, and why he believes he’s still alive today
I’m still fighting
Jonathan Colchester is the last person
who would want to be defined by his
disability – he was diagnosed with
Duchenne muscular dystrophy at the age of
five. For better or worse, though, it’s the
condition that people usually talk about when
they first meet him. Jonathan’s next birthday is
in May and he believes he may be the oldest
man in Europe living with a condition that
causes the death of many people in their
mid‑20s. “I’m a fighter, that’s why I’m still here,”
he says.
The fact remains that no one quite knows
why Jonathan is alive today. For a man who is so
positive and pro‑active about his health, it’s a
constant source of frustration to him that
scientists aren’t more interested in how he
manages on a day‑to‑day basis. “I’m not involved
in any research programmes at the moment,” he
says. “Most of the experts are interested in the
having the equipment he needs. “I’ve been
very lucky, in that I’ve had the right
equipment at the right time,” he says.
“Getting my first ventilator when I was 22
really helped, particularly overnight when my
breathing is shallower. And as soon as a
portable ventilator came on to the market, in
1994, I bought that and it made a huge
difference to my life, as I was able to leave
home for much longer periods and follow my
interests in bird‑watching and art.”
For a man who loves food, getting his diet
right has also been important. At 24, Jonathan
was still able to manage easy‑to‑chew foods
such as cereal, fishermen’s pie and yoghurt. But
by 29, difficulty in swallowing meant that he
switched to a diet of liquid supplements, with
the addition of small amounts of soft cheese
and chocolate.
“I realised that wasn’t meeting my nutritional
needs, though, so for the past five years I’ve
used a really powerful liquidiser to puree my
meals, which means I’ve been able to eat a
greater range of foods. It’s given me much more
energy because I’m eating more calories and it’s
meant that my immune system is stronger, so I
can fight off infections.”
There’s also the pure pleasure in choosing
what he wants to eat – or drink. “I’m a big fan of
Irish coffee,” he laughs.
A life worth livingGiving people an insight into living with muscle
disease is important to Jonathan, and was the
inspiration for his autobiography called A Life
Worth Living, which he wrote in 2002. It’s an
incredible read, not least because he has packed
an incredible amount into his 40 years.
A Life Worth Living details Jonathan’s
childhood and the progression of his condition,
but also includes the trips he has made around
the world with his family (mum, dad and sister
Christine), his interests in nature, painting and
drawing and the friends he has met along
the way.
“I want to demonstrate that it is possible to
overcome severe disability and lead a fulfilling
life, while at the same time adapting to the
changing patterns the disability imposes” he
explains in the book’s preface.
Positivity and adaptability are two themes
that resonate throughout the book. Jonathan
may no longer be able to travel widely – a
family holiday to the Canadian Rockies and
Yosemite is remembered as a particular
favourite, especially for the mountainous
landscape, wildlife and incredible sense of
peace – but he can still indulge his love of bird‑
watching in the uk, with trips out to wildlife
spots or simply watching the birds in his
cutting‑edge science and finding cures, which
of course offers great hope for the future. But I
think the practical stuff about how you live with
the condition is important too.”
For Jonathan, living with Duchenne muscular
dystrophy means eating well, keeping up his
physiotherapy, maintaining effective care and
“i’ve had the right equipment at the right time. getting my first ventilator when i was 22 really helped”
Jonathan at 40
interview
targetmD 1�www.muscular-dystrophy.org
A matter of faithA turning point in Jonathan’s life came when he
was 19 and read a book called Choices and
Chances by the American author Joni Eareckson,
who was paralysed from the neck down in a
diving accident at the age of 17. Her courage
and faith in God inspired a greater spirituality in
him and his faith now underpins his life.
“My belief gives me hope for the future and
something to get up for” says Jonathan. “It helps
me to get through the day, knowing that I’m
being looked after. I was happy in myself before,
but it has given me a lot more joy and meaning
in my life.”
Regular prayer and study of the Bible are all
parts of Jonathan’s everyday existence that he
shares with friends and fellow believers. “One
thing I can look forward to is the day when I get
my new body in heaven. I will not be in a chair”
he says. “I sometimes have quite a bit of physical
pain. It often makes me think of heaven where
there will be no pain or tears for anyone.”
My messageWhen Jonathan was asked what message he
would like to bring to readers of Target MD, his
reply was predictably uplifting. “keep fighting
for the future” he said. “I still have hope that a
cure for muscular dystrophy can be found. The
way research is going is very hopeful. Positivity
is really important and being patient with your
physical condition.”
Jonathan’s friend, Professor R Edwards,
echoes this sentiment. He says that Jonathan is
living proof that “the full life is lived by and
through an active mind”. To finish, Jonathan
simply quotes from the speech he gave at his
fortieth birthday party: “The best thing about
the future is that it comes one day at a time.”
For a copy of A Life Worth Living (£9.99, plus p&p),
email [email protected].
Proceeds are donated to the Muscular Dystrophy
Campaign; more than 700 copies have been sold
so far.
Jonathan on his 21st birthday
milestonesJonathan’s book charts the development
of his condition
Age 5 Diagnosed with Duchenne
muscular dystrophy.
Age 5 uses a bicycle with stabilisers.
Age 5 Receives 10‑metre swimming badge.
Age 9 Occasionally uses a wheelchair
at school.
Age 10 uses a wheelchair full time.
Age 15 undergoes a back operation.
Age 16 Takes up painting on stone, slate
and paper.
Age 20 No longer physically able to paint.
Age 22 uses a ventilator for the first time, on
average for 9 hours in 24.
Age 23 Resumes his interest in art through
less physically demanding pen and
ink drawings.
Age 27 No longer physically able to
manipulate and coordinate the pen
for ink drawing.
Age 27 A portable ventilator comes on the
market. This is a great liberator: it
makes day trips and weekends
away possible.
Age 29 A full liquid diet of ‘Esure’ plus small
amounts of cheese, chocolate and
salmon mousse.
Age 29 Time off ventilator: maximum
5 hours in 24 hours.
Age 34 Increases his calorific intake to
boost energy.
Age 35 Time off ventilator: maximum just
over 3½ hours in 24 hours.
garden. Visits to gallery exhibitions have
replaced actual painting and drawing, but his
artworks decorate the walls of his flat (one of
his paintings, of a kingfisher, has been printed
on a card and sold hundreds of copies to raise
money for various charities, including the
Muscular Dystrophy Campaign). Moving into
his own home, six years ago, has given him
more independence and responsibility.
Jonathan also has a busy social life, with
friends dropping in to see him, or trips out to
the cinema. “It is difficult sometimes,” he admits,
“as a lot of my friends died younger; part of the
reason I wrote the book is as a tribute to them.
But I still have people that are incredibly close
to me, like my friend Edward, whom I’ve
known for 36 years and Paul, who is always
there for me.”
His parents and sister are there too as well as
Jonathan’s niece Lauren, who is five and
nephew Nicolas, who is eight. “Being an uncle
has provided a whole new experience for me”
he says happily. “Nicolas and I play Nintendo DS
together and the children will often climb up on
to my lap and sit with me.”
Book extract“In 1984 [when I was] at Hebden Green special school, I had a girlfriend named Katherine who had
Spina Bifida. When I first set eyes on her, I didn’t have enough courage to chat to her because I was
nervous. My heart kept beating faster and faster. I heard somebody mentioning her name, and I was
sure they said Katherine. A few days later I chatted to her friend to make sure her name was
Katherine. She said it was and asked me why I wanted to know, so I said “because I like her!”
The following day I talked to Katherine and my words came out fast because I was nervous. . . .
Katherine talked about her driving lessons. She drove a Mini Metro which had been specially
adapted with hand controls. I chatted to her on a number of occasions and on my 17th birthday I
asked her out. I just couldn’t believe it when she said yes! The following Saturday afternoon
Katherine came to my house in her car. It was a beautiful sunny day when she first arrived and I took
her down the garden to see the menagerie — our sheep, lambs and ducks.”
lifestyle
1� targetmD
mark Disney, aged 40, lives in Surbiton
with his wife Jude and three
daughters: Jessie (nine), Maddie (six)
and Evie (two). He climbed kilimanjaro in
October 2007.
“Thankfully, I haven’t been touched by
muscular dystrophy. My interest in raising
money for the charity came about because I’m
on the fundraising committee for the
Microscope Ball, so I know a little about the
condition and wanted to help.
“Climbing kilimanjaro appealed because I
wanted a challenge but, with three children, I
didn’t want to do anything dangerous. Being at
altitude presents risks, but these are minimal if
you take a guide and approach the experience
responsibly. It took us seven nights and there
were six of us in the team, including my
colleague Malcolm Dalgliesh. The guidebooks
officially describe the climb as a ‘walk’, but I
exercised four or five times a week in the
months beforehand. I didn’t want to have to
face the office having not reached the summit.
From trekking the Sahara to scaling the peaks of Snowdonia, supporters of the Muscular Dystrophy Campaign have faced incredible challenges to raise money for the charity. We speak to four individuals and learn the stories behind their achievements
the challenge of a lifetime
1. “I climbed
Kilimanjaro ”
“One of the biggest surprises was how
arduous it was each night, camping out on the
slopes of kilimanjaro. It’s a dormant volcano, so
the terrain is harsh with temperatures dropping
to around ‑7 degrees at night. I struggled with
altitude sickness, experiencing headaches and
disorientation. It wasn’t severe, but we could see
others coming down the mountain in a
distressed state, so we were aware of failure and
of the difficulties suffered by others.
“On the seventh night we began climbing at
midnight and reached the peak at 7am, just at
sunrise. When we reached the summit we were
hit by complete elation coupled with
exhaustion. Due to the altitude, we could stay
only a few minutes to take pictures and enjoy
the view before our guides hurried us down the
mountain. After days trekking up, the descent to
base camp took just two and a half hours. We
were so excited that, once there, we didn’t know
whether to eat, drink or sleep, so we did a bit of
each before completing the final three‑hour
walk to the last camp. It was wonderful to see
my family all waiting for me at the airport on
my return.”
Amount raised: £55,000, divided between
the Muscular Dystrophy Campaign and
African charity, Partners in Health.
It’s a jungle in here: harsh terrain
around kilimanjaro
Mark Disney, right, and Malcolm Dalgliesh during their week-long trek to the summit
For support call 0800 652 6352
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targetmD 1�www.muscular-dystrophy.org
kelly Matthews, from Carmarthen, is 28
and has myotonic dystrophy. She
joined last year’s Sahara trek,
completing it in memory of her mother who
also had the condition and
who died just one week
before the event began.
“I made a promise the
day my mum died that I
would carry on with the trek
regardless. Her funeral was
just two days before I left,
so it was immensely
difficult to find the strength
to continue with my
preparations. But I wanted to
make sure that I would make
my mum proud.
“I was excited about taking on this huge
challenge and apprehensive about how I would
cope in the intense heat. My friend Lynda
decided to come with me so we trained
together, beginning by walking three or four
miles a day and building up to 12 or 15 miles in
one stint. Before she died my mum spent a
considerable period in intensive care, so I wasn’t
training as much as I should have been, but my
family and friends were very supportive. The
night before I was
due to leave, my
friend and my sister
helped me pack my
bag and double
checked to make
sure that I hadn’t
forgotten anything. Leaving my dad at the
airport was incredibly emotional, but I soon
realised that everyone on the trek had personal
reasons for being there. It was almost like
therapy walking every day and taking time
away from everything going on back home.
Each of us on the trip seemed to understand
when someone wanted to talk and when they
wanted to be left alone.
“We walked between 12 or 14 miles for five
days. We would begin at 6am with breakfast and
crossed a variety of terrain, from sand dunes up
to our hips to a dried‑up seabed. Sometimes
we’d come across camels or nomads in the
middle of nowhere. One day we saw a man on a
moped! Being in the desert was difficult at
times, especially being so far away from my
family, but when we reached the finish line as a
group, I felt an incredible sense of achievement.
The Sahara is an amazing place and I learnt such
a lot about myself. It sounds a cliché, but it really
was a life‑changing experience. I’m hoping to
take part in next year’s event in Costa Rica (see
page 16) and continue campaigning for
muscular dystrophy.”
Amount raised: £6,000, including £3,000
from a charity barbecue.
kelly, on the left with arms outstretched and giving thumbs up below, and fellow trekkers in the Sahara
2. ‘‘I trekked
the Sahara ”
3. ‘‘I climbed
the highest peaks
of Snowdonia ”
On 4 May last year, David Stockdale and
19 of his friends attempted to climb
the 15 peaks in Snowdonia higher
than 3,000ft – all in one day. On the same date,
his son, Lawrie (12), daughter Freya (eight) and
their pals set themselves the goal of swimming
15km in the local pool. Here, David describes
their challenge.
“My son Lawrie was diagnosed with Becker
muscular dystrophy in 2006. Muscular
Dystrophy Campaign has provided support for
our family and also does a huge amount of vital
research, so I was motivated to do something
constructive and give something back to the
charity. I decided to raise money by ascending
the 15 highest peaks in Snowdonia and I
recruited work colleagues and chums to climb
with me. I felt a lot of responsibility for their
welfare, especially as there are two particularly
dangerous parts of the walk with a real risk that
someone could lose their life, but there was a
huge amount of camaraderie on the team. Most
of us undertook a rigorous fitness regime in the
months beforehand and at 3am on 4 May we
were ready to begin the first part of our
adventure – the dauntingly steep and
dangerous Crib Coch. Of the 20 people starting
out, nine completed the whole challenge,
finishing at 11pm that night.
“Reaching the end of the event to be greeted
by the guys that hadn’t made it, plus the four
people who had worked as our support team,
was incredible – we all felt tired but
emotionally charged.
“I was relieved too, as three‑quarters of the
way through my knees had started to give up!
Lawrie, Freya and their friends also smashed
their goal in their own challenge. They’d
planned to swim 15km – 600 lengths – with
Lawrie completing the final kilometre. In the
end, they achieved almost double that.”
Amount raised: £17,000.
* David, his wife Helen and their friends are
now preparing for a new challenge – they plan
to walk the length of Hadrian’s Wall (84 miles) in
two days, on 3 and 4 May. On 17 May, Lawrie and
his friends aim to swim 2,000 lengths (54km) in
three hours. Together, they hope to raise
£20,000 for the Muscular Dystrophy Campaign.
If you would like to sponsor them, go to
www.justgiving.com/helenstockdale1
Peak condition: David Stockdale (front) and fellow climber Roger Brosch
1� targetmD
5 July 2007After a few hours, the going started to get really
tough. We were high enough to be caught up in
blizzard conditions with high winds and
whiteouts. To get a rhythm going, I counted my
steps in sets of 300, but as the air became
thinner my brain ceased to function properly
and I couldn’t count past 10.
We pushed through the cloudline and as
visibility improved, the temptation to stop
became too great and I paused to look
breathlessly into the valley below. It was an
incredible sight – with heavy snow still swirling
around the rolling blanket of low‑lying cloud.
That picture will stay with me forever.
The last 150ft were the hardest. Adrenalin
took over, but even that was not enough to
stave off the impact of extreme altitude and I
began to cough violently. Hands on knees, I
staggered on towards the top, vision blurring
slightly. Negotiating the narrow ridge that leads
to the top was terrifying, with a sheer drop and
a 1,500ft fall into nothingness on either side.
Finally we reached the patch of jagged rock that
is the summit. We stayed there – wordless – for
about 15 minutes, sitting on the cold, snow‑
covered rock and staring out into space as the
blazing sun finished its own ascent in the skies
behind us. We then began the descent. Among
many other things, this experience has made
me thankful for my health and the opportunity
to experience things denied to so many by
illness. I hope our contribution helps those less
fortunate and I look forward to my next
challenge: Mount Elbrus in Russia, 5,670m…
Amount raised: £2,400.
To read Nathan’s full account, log on to
www.muscular-dystrophy.org/your_story and
click on Fundraising.
4. ‘‘I climbed
Gran Paradiso ”
nathan Calcott and Gary Fuller are keen
climbers who set out to raise funds for
Muscular Dystrophy Campaign last
summer. Gary made contact with us because his
wife cares for someone with muscular
dystrophy and Nathan’s employer, First
Commercial Bank, gave £1,000 in sponsorship.
First the pair headed for Chamonix in France,
intending to climb Mont Blanc, 4,810m high. But
as Nathan records in this edited extract from his
expedition diary, bad weather soon led their
party into danger.
4 July 2007Storm conditions approaching from the North
West meant Gary and I were in for a challenging
two days on Mont Blanc. I remembered last
night’s safety briefing: “This is a real climb, with a
success rate of only 50 percent…”
After several hours of climbing Gary and I
realised that we were not likely to be among the
success stories. The wind tore down the incline,
pelting us with snow. This made the going even
harder – my lungs felt tight and empty and my
thighs felt like a bag of rocks. Safety became a
real concern and eventually we were forced to
turn back to base camp. Our guide explained
that no climber in their right mind would
attempt the climb in those conditions.
Determined to carry on with the fundraising bid,
Nathan, Gary and their guide crossed the Italian
border and drove 50 miles to their back-up
mountain: Gran Paradiso, at 4,061m the highest
mountain in the Graian Alps. With persistent bad
weather, reaching the lower peak would be a real
achievement. Nathan’s diary continues.
could you face the challenge?
Following the incredible success of our 2007
Sahara expedition, in which 24 supporters
raised £75,000 and much‑needed awareness
for the charity, we are pleased to announce
our Costa Rican Quest,
taking place in January
2009. We will be taking 30
intrepid adventurers to the
rainforest for a week of
trekking, camping and
white‑water rafting. Led by
an experienced guide,
you’ll travel for around
eight hours a day, crossing
72km of undulating
terrain in a hot, humid,
cloud‑covered wilderness.
Truly the adventure of
a lifetime. Get in touch
soon to secure your
place: this is an unrepeatable opportunity.
To find out more, contact our events
team on 020 7803 4300 or email
Gran Paradiso or bust: Nathan Calcott, left, with
Gary Fuller, centre, and a fellow climber
get in touchWe need you! You could become one of Target MD’s media
volunteers by sharing your story with us. If you have a story to tell, please contact our Press Officer, Salimah Lalji.
Salimah Lalji
• 020 7803 4844
lifestyle
Sign up to our Costa Rican quest and explore the rainforest while helping to raise valuable funds for the Muscular Dystrophy Campaign
For support call 0800 652 6352
lifestyle
research
1� targetmD For support call 0800 652 6352
What is myasthenia?The term myasthenia describes muscle
weakness that gets worse with exercise.
Frequently the patient feels worse at the end of
the day and climbing stairs is difficult. This type
of weakness is characteristically seen in people
who have a defect in the transmission of
information from the end of their nerves to their
muscles. The site at which this information
transfer takes place is termed the
neuromuscular junction. Myasthenia can result
from an autoimmune response in which one’s
own body reacts against proteins at the
neuromuscular junction, or more rarely it is
inherited. This latter form, usually called
‘congenital myasthenic syndrome’ will be the
subject of this article.
How our nerves and muscles communicateWhen we tell our muscles to contract, the
electrical signal must jump across a small gap
from the end of the nerve to the muscle. This is
achieved by converting the electrical impulse
into a chemical transmitter that rapidly crosses
the gap and binds to special receptors on the
muscle surface, which in turn signals the
muscle to contract. Nature has evolved the
Muscular Dystrophy Campaign in partnership with Myasthenia Gravis Association, is funding important research into the treatment of Myasthenia Gravis and associated conditions. Here, project leader
Professor David Beeson explains his work
hope for hereditary myasthenia
nerve
muscle
neuromuscular junction to enable this process
to occur rapidly and efficiently.
The role of proteinsA large number of different proteins is involved
in the communication process between nerves
and muscles and if they harbour defects
(mutations), then muscle weakness can occur.
The major interest of my group is in patients
who retain the ability to receive nerve signals,
but only at a reduced level. For any one patient
we aim to identify which protein is defective, to
find out why it is not working efficiently, then to
tailor drug therapies accordingly. The field has
advanced rapidly in the past 15 years and we
now know that defects in at least 11 different
genes can give rise to inherited myasthenia.
Even so, we are unable to locate the genetic
defect in approximately 40 percent of cases of
congenital myasthenic syndrome seen in clinic.
our research discoveriesThe work of my group mainly focuses on what
can go wrong on the muscle rather than in the
nerve, as the majority of cases are due to muscle
defects. On the muscle we find we can divide
the defects into two types – those of the
neurotransmitter receptor itself (the
acetylcholine receptor), and those in the protein
responsible for locating and clustering the
receptors immediately below the nerve.
Mutations in the genes that code for the
acetylcholine receptor subunits were the first to
be identified. Electrical recordings found that
these changes could cause either the central
pore of the receptor to be open for too long, the
‘slow channel syndrome’, or for too short a
period of time, the ‘fast channel syndrome’. This
is an important first finding since it implies that
patients with a slow channel syndrome should
have treatments that partially block the
receptor, whereas patients with a fast channel
syndrome should have treatments that enhance
the receptor activations.
Following on from these discoveries it was
noted that the majority of mutations were
The neuromuscular junction Fluorescent image (top) and diagram (above) illustrating the junction where the motor nerve (green) meets a muscle fibre. The bright red lines show the position of the acetylcholine receptors on the surface of the muscle fibre.
A fluorescent image of receptive muscle fibre
research
targetmD 1�www.muscular-dystrophy.org
located in the adult e‑subunit of the receptor
(see diagram above). Moreover, most of these
mutations nullified the activity of the adult‑type
receptor. How could patients survive if they
have no adult receptors to receive the nerve
signal? The answer is that the fetal form of the
receptor, which usually stops being generated
in large amounts late in gestation, is able to take
over. However, it is made only at low levels in
adult muscle and thus this subset of patients
has what is called ‘acetylcholine receptor
deficiency syndrome’ – there are just too few
receptors on the muscle to receive a full signal.
Like the fast channel syndrome, we would look
to treat these patients with drugs that enhance
or amplify the signal to the muscle.
Why further study is neededAs mentioned above, a second crucial
prerequisite for efficient signal transmission is
aligning and packing the receptors just below
the nerve terminal. This process is not yet well
understood. In fact, we hope that the study of
our patients will provide clues about which
proteins are key players in this pathway. One
protein that we have been able to study is called
‘rapsyn’. It is crucial for clustering of the receptor
and acts as a sort of anchor to keep the
receptors correctly located. We believe that
many of the rapsyn mutations cause the
densely packed clusters of receptors to disperse
– without an ‘anchor’ they drift away from their
correct location. The result is a syndrome we
call ‘acetylcholine deficiency due to
RAPSN mutations’.
Finally, the focus of our most recent research
has been on a new protein called Dok‑7. It is
early days in the study of this protein, but it
appears to be involved both in the initial stages
of forming the neuromuscular junction and also
in maintaining the integrity of the structure
once formed. Patients with mutations in this
protein appear to have junctions that are much
smaller than normal, although the receptors are
packed at normal density. At present this
condition is termed ‘Dok‑7 congenital
myasthenic syndrome’.
Can you explain what your research
is about?
I am investigating the disease mechanisms
of seronegative and ocular myasthenia
gravis. Myasthenia gravis is an autoimmune
disease affecting the neuromuscular
junction, causing muscle weakness. In
around 90 percent of patients we can
identify the antibody causing the disease.
The remaining patients have clinical features
similar to an autoimmune disease, but the
exact antibody is unknown (hence it is called
“seronegative”). I am working to define the
pathological mechanisms in this group of
patients. In addition, I am looking at the
clinical and neurophysiological
abnormalities in those patients who have
only ocular (eye) symptoms due to
this disease.
What does a typical day at work involve?
The majority of my time is spent in the
neuroscience research lab. I also attend
neuromuscular clinics (including myasthenia
and muscle disease clinics) with Dr David
Hilton‑Jones and neurophysiology clinics
with Dr Robin kennett. I perform muscle
biopsies and we have a muscle biopsy
review meeting once a month. It is very
rewarding to see the patients, then to
correlate the laboratory findings.
Do you think the Muscular Dystrophy
Campaign should continue to fund
clinical fellowships?
I think the Charity is doing a tremendous job
in bridging the gap between clinical training
and research. I know of several physicians in
the uk providing excellent neuromuscular
services, who were all initially funded by
Muscular Dystrophy Campaign.
How important has the support from the
Muscular Dystrophy Campaign been for
your career?
What I find most attractive about the charity
are its efforts to integrate clinicians and
scientists working in the national
neuromuscular field. This is done in the form
of regular meetings, conferences and
symposia. The muscle and nerve centre in
Oxford continues to provide research
facilities, largely due to the support provided
by the Muscular Dystrophy Campaign,
whose fellowship has nurtured my passion
for providing a good clinical service.
view from the labMuscular Dystrophy Campaign in partnership with Myasthenia Gravis Association, is funding Dr Saiju Jacob, a neuromuscular fellow at the John Radcliffe Hospital, Oxford. Here he explains why such funding is so important to him and his fellow clinical researchers
get in touch
If you have any questions about any of
our current research projects or want to get in touch with the relevant clinicians, contact Dr Marita Pohlschmidt, Director of Research.
Dr Marita Pohlschmidt
•020 7803 4803
β βδ δ
eγα α α α
Fetal Adult
Diagram of the two forms of the muscle acetylcholine receptor Each receptor has five subunits that carry the signal into the muscle. The adult subtype replaces the fetal subtype late in gestation.
Translating lab work into treatmentA national service for mutation detection
and treatment of congenital myasthenic
syndromes, part of a consortium for the
diagnosis of rare muscle diseases, is based in
Oxford. The service provides rapid translation
of discoveries in the laboratory into clinical
practice. Although congenital myasthenic
syndromes are often difficult to diagnose in
the young, study of the clinical features of
patients is helping us to identify clues for
diagnosis and for pinpointing the location of
the underlying genetic defect. But much still
needs to be done. There are more genes to find
and present treatments are only partially
effective. We hope advances in the
understanding of these conditions will be
maintained for the next decade.
20 targetmD For support call 0800 652 6352
Scientists, clinicians and patient groups from around the world recently attended the first Muscular Dystrophy Campaign conference on translational research. Dr Marita Pohlschmidt, Director of Research, reports
Premier conference call
a two‑day conference organised by the
Muscular Dystrophy Campaign, in
partnership with the new MRC Centre
for Neuromuscular Diseases, took place on 1 and
2 February 2008 at the Institute of Child Health
in London. This inaugural scientific meeting
celebrated the first MRC‑funded Centre for
Translational Research in Neuromuscular
Diseases. The programme included international
experts in the field of muscle disease, with some
325 clinicians, scientists, representatives from
government organisations and patients’ groups
attending. Professor Dominic Wells, Imperial
College, said: ” This conference represents
probably the greatest concentration of clinicians
and basic scientists for neuromuscular disorders
in the uk I have come across so far.”
As well as informing delegates of the latest
advances in basic and clinical research, the
conference updated them on the research
projects currently being funded by the Muscular
Dystrophy Campaign. More than 60 scientists, a
third funded by us, displayed information on
their newest research advances.
Working together to fight muscle diseaseThe new MRC Centre for Neuromuscular
Diseases is a joint venture between university
College London and the university of
Newcastle‑upon‑Tyne. It has been set
up to address the various barriers that
currently hinder a speedy “bench‑to‑
bedside” transfer of technology.
Activities include the establishment of
clinical trial centres, tissue and cell banks, as well
as assessing the most suitable animal models to
test newly developed treatment approaches.
The activities of the centre are monitored by a
Scientific Advisory Committee, which comprises
researchers from Europe and the uSA. And it
was those international experts who
contributed to the high scientific standard of
the meeting by presenting the latest research.
The delegates were welcomed by Professor
Mike Hanna, Director of MRC Centre for
Neuromuscular Diseases and Professor Malcolm
Grant, President of uCL. Chief Executive of the
Muscular Dystrophy Campaign, Philip Butcher,
expressed the charity’s support and
expectations for this new initiative.
Adrian Pollitt OBE, Head of the National
Specialised Commissioning Group, shared his
ideas and views on how new advances in
translational research can be efficiently
implemented into NHS services.
In the evening, participants attended a gala
dinner in Lincoln’s Inn, Holborn.
International inputThe conference continued with fascinating
presentations from Dr John Porter, Programme
Director for Neuromuscular Disease at the
National Institute of Health, uSA and Dr Serge
Braun, Scientific Director of the Association
Française contre les Myopathies (AFM) in France.
Both talked at length about the various
initiatives and plans to support translational
research in neuromuscular diseases in their own
countries, while emphasising the requirement
for an international collaboration to achieve
their ambitious commitments. In the afternoon,
Condition Specific Groups and other networks
expressed their thoughts on how to accelerate
the transfer of scientific results into the clinics so
that patients may enjoy an immediate benefit.
The conference ended with the MDC’s award
of travel grants worth £750 for the best scientific
poster presentations to groups headed by Dr
Janet Smith, from the university of Birmingham
and Dr Lyndsey Craven, working with Professor
Doug Turnbull at the university of Newcastle.
Baroness Thomas of Winchester, who has limb
girdle muscular dystrophy, said: “I am very
impressed with the research advances
presented at this conference and how well the
Muscular Dystrophy Campaign is supporting
the scientists in this country.”
We would like to express our thanks to
Genzyme, Summit Plc, Bio Products Laboratory,
Biotest, Grifols and PTC Therapeutics, for
sponsoring the conference.
To download a podcast of the conference,
visit: www.muscular-dystrophy.org/research
conference update
research
Anne Patterson and Philippa Farand from Duchenne Family Support Group
Dr Doug Turnbull is interviewed for a podcast about the conference
Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
www.muscular-dystrophy.org
the internal organs and shorten his
life dramatically.”
It’s Adam’s approach to his difficulties that is
so inspiring, says his mother. “When he was in
hospital, he said he felt sorry for his sisters
Hannah and Charlotte, because he was getting
all our attention.” He also showed true grit
when taking his GCSEs. He would sleep in the
morning, then Christine would read textbooks
to him in the afternoon. For the tests, she says,
“One teacher came to invigilate and another to
write down his answers, as Adam was too weak
to do that himself.” Incredibly, Adam achieved
two A* grades, five As and two Bs.
Christine says, “Adam manages to get on with
life without any anger, bitterness or self‑pity.”
Matthew and Adam will receive a one-year
subscription to Mojo or Grazia magazine and a
Body Shop Gift Box for their parents.
children of the year
Child of the Year: Matthew BerryNominated by: his mother, Sue BerryMatthew Berry is only 12 years old, yet he’s
already a seasoned campaigner for the needs of
disabled people. Matthew lives with his mother
Sue and 15‑year‑old brother Andrew in
Angmering, West Sussex. He was diagnosed
with Duchenne muscular dystrophy when he
was four and was just seven when he first talked
about his experiences of living with the
condition, giving an interview to his local paper
to help promote Jeans for Genes.
The following year he was asked to speak to
Sussex university medical students studying
musculoskeletal anatomy, a trip that’s been
repeated every year since. He’s also appeared on
TV in support of his local hospice, Chestnut Tree
House, attended lobbies of Parliament with
Muscular Dystrophy Campaign and helped
support younger boys with Duchenne muscular
dystrophy. “He doesn’t come across as a boy in a
wheelchair who needs help” says Sue. “He is
doing everything he can to get on with his life.”
It’s Matthew’s presence that marks him out as
an inspiration, says his mother. “People can be
uncomfortable around a disabled child, but
Matthew is so positive and there’s such humour
in the way he speaks that it’s an uplifting
experience.” Matthew and his mother make sure
that he makes time to fulfil his own needs. “He’s
interested in everything from Star Wars to
Picasso. He soaks up information and that’s
important because it’s using his ability, which
shines out of him” says Sue. “He wants to show
people that they can look beyond his disability.
He’s extremely bright, with a wonderful sense of
humour and always keen to speak to people –
and that’s nothing to do with his wheelchair. It’s
a mark of his own character.”
Child of the Year: Adam WeatherillNominated by: his mother, Christine WeatherillAdam, who lives with his family in Winchester,
was diagnosed with Duchenne muscular
dystrophy at the age of two. The past couple of
years have been particularly challenging. Two
years ago, when he was 14, Adam had an
operation to correct a 90° curve in his spine. The
following year he was diagnosed with mild
cardiomyopathy. “He was put on night‑time
ventilation, medication for his heart and
painkillers, but nothing helped” says his mother,
Christine. “It then turned out he had a life‑
threatening infection caused by the original
spinal operation. The only answer was a three‑
hour procedure to remove the metalwork that
had been inserted into his spine. It was thought
the bones in his back would have fused, so his
posture would no longer be a problem.”
Following the gruelling operation, Adam’s
posture began to deteriorate again; his spine
now has a 70° curvature and his surgeon says
the only solution is an eight‑hour procedure to
replace the metalwork.
“If he opts for further surgery, there’s a
good chance he will not survive” says Christine.
“If he does nothing, the curvature will affect
In the last issue of Target MD, we asked you to nominate a child who inspires you. Meet our final Inspiration Awards 2007 winners, Matthew Berry and Adam Weatherill
get in touchIf you know an inspirational person who should
feature on this page, contact Ingrid Ambrose at the Muscular Dystrophy Campaign.
Ingrid Ambrose
• 020 7803 4838
inspiration awards
targetmD 2�
Adam WeatherillMatthew Berry
For support call 0800 652 6352
Telling a child that he or she has muscular dystrophy or a related condition can be the hardest conversation a parent ever has. But ongoing communication about the condition can really help your child – and you – to cope with the challenges. Jane Stein explains
One of the biggest concerns for a
parent whose child has muscle
disease is how to talk to the child
about their condition. It is such an important
thing to get right. Often parents say nothing
because they want to protect their child
(sometimes indefinitely), but this is rarely a
good idea. It is best to give the child truthful,
simple, honest explanations that address the
current issues and which you can build on at
a later date.
To a child, a parent avoiding a discussion can
send a message that their condition is too bad
to talk about. This can cause the child more
worry and might prevent them from telling you
how they feel. Achieving a balance is important;
it is equally unwise to burden children with
information they may not yet understand or
want to know.
One expert, David Waters from the university
of Virginia suggests that you follow three
golden rules when talking to children: listen
more than you talk, use questions more than
answers and follow more than you lead. As he
points out, “the hardest thing about talking to
kids is that you don’t know what they’re going
to say.”
It is essential to get in ‘sync’ with your child’s
thinking and to start where your child is, not
where you are or where you think your child
should be. At the end of your conversation,
check that your child has understood what has
been said and that they know you can talk again
at any time if they have further questions.
Good questions to ask include: “What do you
know about…?”; “What have you learned or
guessed about this…?”; “Do you have any ideas
why…?”; “So you’re wondering…?”; “Do you
have any questions you want to ask me?” and
“What do you think about what I’ve been telling
you?” If your child finds the information
upsetting, you might agree that it’s sad and say,
“I’m sorry I had to tell you this.” Remember that
it’s fine for a parent to share emotional feelings
with their child.
“He never asks questions”Like many children with Duchenne muscular
dystrophy, 11‑year‑old Josh Ison from Reading
never asks questions, although he does
sometimes say, “It would be good if I could
walk.” His parents Laura and Lee try to take the
opportunity to explain the need for
physiotherapy and check‑ups but otherwise do
not try to initiate discussion. They agree that if
Josh asks questions they will answer them
honestly, but until then they respect his right
not to talk.
Josh is moving to secondary school in
September and it might well be then that he
will want to know more (when children he
doesn’t know ask questions). For the moment,
Josh seems happy and enjoys a good range of
activities. As the Australian Muscular Dystrophy
talking to children
“three golden rules: listen more than you talk, use questions more than answers and follow more than you lead”
2� targetmD
care support Matthew Berry
11-year old Josh Ison and family
hospice, Helen House. I’ve shown them pictures
and they’re both keen to visit. I’m really glad
we’ve talked.”
“He talks in a negative way”Sometimes having too much information too
early, or having inaccurate information, can
cause distress. One professional contacted us
about this issue: “I am working with a teenager
with Duchenne muscular dystrophy who is
concerned about his future and talks about his
life in a negative way. He will not plan activities
or get involved in anything. What can we do to
help him?”
The Muscular Dystrophy Campaign’s advice
would be to talk gently to the young man to try
to assess what his understanding of the
situation is. Listen carefully and try to discover
exactly what his concerns or fears are. Perhaps
there are things he would like to do but which
seem impossible to achieve? Don’t rush to give
false reassurances but look for constructive
ways forward.
As AMDS says: “There is a need for a balance
at all stages between practical realism and
acceptance of what is happening;
understanding and sharing the negative
emotional reactions and still allowing everyone
space for optimism, hope and encouragement.”
Be open to discussion. Sometimes the help of
someone outside the family can be valuable – it
is often easier to share upsetting thoughts with
someone who is less emotionally involved than
a parent. Hospices for children or young adults
may offer valuable support or a clinical
psychologist might assist.
“The key thing is to know your child”Mike Gibson from Oxfordshire is 26 and has a
diagnosis of Duchenne muscular dystrophy, so
he is well placed to provide an adult
perspective. Since leaving school, Mike has
obtained a degree in aeronautical engineering
care support
targetmD 2�www.muscular-dystrophy.org
Society (AMDS) says, “It is important to point out
to other people that children with muscle
disease have a right to learn about muscle
disease at their own pace without others forcing
the realisation on them.”
Sometimes when children don’t ask direct
questions, they communicate anxiety or
confusion through challenging behaviour. We
all need to make sense of what is happening
and in this situation, giving opportunities to talk
and acquire further information is important.
You can open conversations with observations
like, “Has doing X got a little more difficult for
you? I wonder what we could do to make it
easier. What ideas do you have?”
“I talked to our children using the booklets from the Muscular Dystrophy Campaign”Benjamin Hafeez is 11 years old and lives with
his family in Buckinghamshire. Benjamin has
Duchenne muscular dystrophy and started at a
new school in September. The school was keen
to support Benjamin, but felt they needed to be
clear about what he did, and did not,
understand about his condition.
Benjamin’s mother, Danielle, took the
opportunity to talk to Benjamin and his seven‑
year‑old (able‑bodied) brother Ross with the
help of booklets produced by the Muscular
Dystrophy Campaign. “I read the booklets
myself first and then I sat the boys down
separately and talked with them. I explained to
Benjamin that he was born with Duchenne
muscular dystrophy and that it wasn’t his fault
that he had it. We went through the booklets
together. At the end of our discussion I asked,
‘How do you feel?’ He said, ‘Okay’, and gave me a
cuddle. I reminded him, ‘If you ever want to talk
more about it, just tell me.’ He seemed happy
with that.
“I talked to Ross when we were walking home
from school together. I asked, ‘Do you know why
Benjamin goes to a special school?’ He said, ‘No’.
We talked about muscular dystrophy and when
we got home we looked at the booklets and I
said to Ross, ‘If there’s ever anything you want to
know, just tell me and we’ll talk’.
“I’ve left the booklets lying around and both
boys pick them up and look through them –
and Ross has read all through them. Benjamin’s
school is really pleased – it helps the teachers to
know that Benjamin understands more about
his condition and that we can be open with
others, too. I’ve also spoken to both boys about
going to look around our local children’s
Matthew Berry
“it helps the teachers to know that benjamin understands more about his condition and that we can be open with others”
The Hafeez family from
Buckinghamshire
2� targetmD For support call 0800 652 6352
care support
get in touchMuscular Dystrophy Campaign Care Advisor Jane Stein is keen to
hear from individuals and families who want to share their stories and experiences. Jane would also love to hear from people who are interested in giving feedback on new literature. Jane Stein
• 01865 234221
and is now studying for a PhD. He writes: “Even as
someone with Duchenne muscular dystrophy, I
find it hard to say how much you should tell
others about their condition and when. As an
adult I always follow the ‘know your enemy’ path,
but with children (including myself when I was
younger) the approach has to be tempered. First,
children don’t always have the experience to
swallow the enormity of being diagnosed with
Duchenne muscular dystrophy without it having
an even greater impact on them. Second, their
26-year old Mike Gibson with his parents
• The following booklets are available from
the Muscular Dystrophy Campaign:
Everybody’s Different, Nobody’s Perfect;
Same but Different; On the Ball (for 11 to
14‑year‑olds); Hey, I’m Here Too! (for siblings).
To request copies, call 020 7803 4800 or
visit www.muscular-dystrophy.org
• www.brainpop.com has a great little
show on Duchenne muscular dystrophy
which is free and suitable for children.
• The Australian Muscular Dystrophy Society
has advice at www.mda.org.au
• Counselling Children with Chronic Medical
Conditions by Melinda Edwards and Hinton
Davis is a textbook for professionals that
might also be helpful to parents: British
Psychological Society 1997, ISBN 978‑1‑
85433‑241‑7.
More resources and contacts on page 38.
for further information
“there is a need for a balance at all stages between practical realism and acceptance of what is happening”
parents have also been given some of the worst
news imaginable, so at that time they might not
be able to give the support their son will need.”
Mike continues: “I feel it’s important to make
sure that boys with Duchenne muscular
dystrophy understand that the cause is genetic,
and doesn’t in any way single them out. Also,
while they don’t need to know the exact cause,
they should be told what they can do to combat
Duchenne muscular dystrophy – exercise,
stretches, diet, medication and so on. The key
thing is to know your child, and understand how
best to help him come to terms with the
condition. Luckily, especially for those newly
diagnosed, the prognosis is in my opinion very
hopeful these days – hang in there!”
care support
targetmD 27www.muscular-dystrophy.org
Dates for 2008Make sure you don’t miss out – get these important dates in your diary now!
• Naidex 2008
NEC, Birmingham, 29 April-1 May
The uk’s largest exhibition of equipment
and services to aid people with disabilities.
Come and meet our Care team at our stand.
• Muscular Dystrophy Campaign
Professionals Network Meeting,
Leeds, 14 May
The day is designed for health and social
care professionals working with children
and adults with neuromuscular conditions
in a variety of disciplines: care staff,
physiotherapists, occupational therapists,
and school and nursery teachers/support
staff are all welcome. Cost is £30 including
lunch and refreshments. For a booking form,
please contact Peter Lawson at
• Conference for people with Becker
muscular dystrophy and LGMD Network
Meeting, Brentwood, 7 June
For enquiries, please contact Jane Stein on
01865 234221 or [email protected]
• Family Weekends, various locations in
England, Autumn 2008 including:
19-21 Sep, Calvert Trust, Keilder Water, NE
10-12 Oct SHARE Centre, Northern Ireland
Thanks to the generous donation of
£50,000 by the Garfield Weston
Foundation, we are planning three Family
Weekends. These are tremendous fun for
all ages – they reduce the feeling of
isolation, offer vital peer‑to‑peer support
and address key issues for individuals and
families. Contact Peter Lawson
Clinical Research & Care Grant funding for 2008-2011: £377,596The following centres will benefit from the
charity’s support for their work:
Dubowitz Neuromuscular Centre and Institute of Neurology, LondonGrant Holder, Professor Francesco Muntoni
The Dubowitz Neuromuscular Centre (DNC) and
the Institute of Neurology (ION) Neuromuscular
Centre made a joint bid this year to set up a
larger facility between the two collaborating
centres. The DNC is one of the largest paediatric
neuromuscular centres in Europe and the ION is
one of the largest adult neuromuscular centres
in the uk. This collaborative grant provides a
great opportunity to take advantage of the
expertise provided by both centres for the
benefit of the patients.
The two centres will provide a training
environment for future neuromuscular
neurologists and will be involved in scientific
and clinical research and development. One
important focus will be the generation of best
practice development for both adults and
children, including the establishment of best
clinical practice guidelines for transition of care
between children and adults.
Newcastle Muscle CentreGrant Holder, Professor kate Bushby
For many years, the Newcastle Muscle Centre
has been involved in developing the best
possible standards for care and diagnosis in
neuromuscular diseases. This expertise is
applied to the local multidisciplinary clinics and
diagnostic services and also has been
disseminated to the national and international
community, via care guidelines and pivotal
papers on natural history and the result of
interventions. The centre intends to invest in the
future by training new neuromuscular
specialists in the best standards of diagnosis
and management, as well as research. The
administrative and clinical research coordinator
roles provided for by the grants will enable the
Our care agenda for 2008In our first issue of Target MD this year, here’s an update of how the Muscular Dystrophy Campaign plans to support people with muscle disease via care grants, conferences and support events in 2008
centre to develop outreach and communication
activities further, as well as providing the
platform for more research, including
clinical trials.
oxford Muscle and Nerve Centre Grant Holder, Dr David Hilton-Jones
The principle aim of the Muscle and Nerve
Centre is to provide an integrated approach to
the management of patients with
neuromuscular disorders. They have
demonstrated the benefit to patients of
working in close collaboration with research
colleagues and the benefit to researchers in
providing them with material from patients. This
has been particularly evident in trying to
identify genetic mutations and in using results
from the laboratory in aiding clinical
management, including genetic counselling.
Patients in the clinics are seen by specialised
staff, including a dedicated neuromuscular
nurse and physiotherapist along with our Care
Advisor. The centre will provide training for a
clinical research fellow, allowing him or her to
gain laboratory and clinical training. These
fellows then go on to become the
neuromuscular specialists of the future.
Wolfson Centre for Inherited Neuromuscular Disease, oswestry Grant Holder, Dr Rosalind Quinlivan
Dr quinlivan was awarded a grant to provide
clinical psychology support for neuromuscular
patients attending the Wolfson Centre. The
service will support families at the time of
diagnosis, loss of walking, transition to
adulthood, times of crisis and bereavement.
Other issues addressed will be behavioural
concerns, especially in children with Duchenne
muscular dystrophy receiving steroid therapy
and children with congenital myotonic
dystrophy. The service will provide strategies to
assist patients and carers in dealing with stress,
behaviour difficulties, chronic illness and
disability. The overall aim is to improve quality of
life and enable full participation in society.
care support
For support call 0800 652 6352
2
Regional round-up
1. scotlandSPIRIT oF CHRISTMAS Carol concerts were enjoyed in
Edinburgh with top young
musicians from St Mary’s Music
School, in Aberdeen with
footballers Jackie McNamara
and Zander Diamond and in
Glasgow with River City
favourites. Thanks to all
who supported these
moving events.
THANk YouHamilton Sports Council raised
£500 and has adopted the
Muscular Dystrophy Campaign
as one of the charities to
benefit from the annual
Hamilton Fun Run.
FuNDRAISING, ETCETERA, ETCETERAEast Renfrewshire Rep Reg
Mackie and a team of
collectors raised more than
£1,600 at the Glasgow Light
Opera Club’s performance of
The King and I. A trust donation
gave East Renfrewshire’s effort
for 2007 a boost, bringing the
total amount to over £15,000.
2. northern ireland and the isle of manTHANk YouS• A question of Thought took
place 29 February‑9 March
2008. Thanks to everyone who
took part.
• Magheragall Presbyterian
Church raised £1,700 for
Muscular Dystrophy Campaign
by organising a concert on the
theme of Classic Musicals.
WELCoMEWe welcome Jenny Lee, who
joined the team in December
and is looking after all the
Rupert Bear collecting tins
across Northern Ireland.
3. north westIN THE SWIMLynda Price of Manchester
swam a total of 2007 lengths of
the pool at her local gym,
completing her challenge
three weeks before the end of
the year and managing to raise
over £2,200. Lynda thanks her
sponsors and the staff at Total
Fitness, Walkden.
THANk YouS• Val Rigby, Joanne Ashton and
Amy Hayes, who took part in
the Hydro Active Women’s
Challenge race in Liverpool,
raising over £800.
• The Maghull Musical Theatre
Company, who raised £400
from their concert.
• Eddie Bradley and everyone
at the Plough Inn, Liverpool.
Eddie had his head shaved and
raised a total of £900.
• Lisa and Richard Morley of
Tottington, who organised a
rock night in Bury raising
over £800.
• Steve and Bev Slack, friends
and family, who took part in
the annual 15‑mile Wirral
Coastal walk. As a result over
£2,700 was raised.
• Christine Ogden of Bolton
who organised a Christmas
German concert, which raised
over £1,500.
4. north eastBuLLSEYE• The Harley Davison Geordie
chapter raised £2,000 from
rallies and various other events.
• ken Sparnon organised a
darts challenge and is set to hit
the bullseye with £1,000.
• Alan Dawes and Phil
Temperley raised £905 with a
sponsored walk of the West
Highland Way.
FEELING GRoovYMick Curry’s Jazz Night grooved
in with £400; Bob Jones’ All Day
Rock Music at Bradford Polish
Club raised a rockin’ £900.
Margaret Bowerbank’s line‑
dancing sessions also raised
£135. Well done to you all!
5. west midlands and walesTHANk YouS• Congratulations to a group of
Year 10 students from
Wolverhampton Grammar
School for raising £6,459.22
from their Coast to Coast relay
run from St. Bee’s Head in
Cumbria to Robin Hood’s Bay
in Yorkshire: 180 miles, which
took 25 hours.
• Thanks also to Roy Mercer,
Steve Heath, Gareth Adams
and Brian Welfare, who raised
£3,098 by walking the entire
184 miles of the River Thames
from its source near kemble,
Cirencester to the Thames
Barrier in London, and to John
Graham who followed the
walkers in a support boat.
• Thanks to Louise Slaughter
and the Aga Shop in Stratford,
who put on a scrummy
demonstration for us on 31
October and raised over £1,000
in one morning.
CHRISTMAS SPIRITOur successful Spirit of
Christmas took place in
Llandaff in Cardiff, Worcester
and Gloucester. All three events
raised well over £15,000.
JAIL4BAIL On 26 February, 14 members of
fundraising
Muscular Dystrophy Campaign Regional Fundraising Managers, Branches and supporters all over the country have been busy organising events to raise money to help fight muscle disease. Turn the page for news on upcoming events
2� targetmD
www.muscular-dystrophy.org
1
34
5 7
9
6
108
the Shropshire business
community paid a minimum
of £500 to be arrested by the
local constabulary. These
volunteer ‘felons’ were then
wined and dined before
their release.
6. east midlandsREMEMBERING A FRIENDHope Valley College, raised
£1,000 in memory of
Mark Cotteril.
THE BIG PuSHBusy Bee Day Nursery in
Alfreton, Derbyshire took
part in The Big Buggy Push
in September 2007 and
raised £514.12.
THANk YouS• David Croker from Sleaford,
Lincolnshire carried out a Big
Push 20 Mile Cycle Ride and
raised a total of £1,208.
• A big thank you to Steve, Lisa
and Jacob Gratton, Dale Cooke
and Natalie Jones, who
completed a10k run in
Nottinghamshire, raising
£1,374.50.
• Thank you to all who took
part in the Rutland Round in
September 2007. The event
raised a magnificent total
of £2,500.
• Thank you to Amy Sutton
from Ashbourne, Derbyshire,
who held a couple of
fundraising events and raised
a fantastic £1,211.
7. anglia & bordering countiesTHANk YouS• Chelmsford, Brentwood and
Rochester Muscular Dystrophy
Campaign Branches teamed
up for the Spirit of Christmas
carol service at Chelmsford
Cathedral. Grateful thanks to
Margaret Cozens, musical
director of The Fidelio Singers
and the wonderful choir Sine
Nomine from Southend
High School.
• Maths teacher Nick Rees has
raised £1,376.15 through a
sponsored abseil off a 130ft
high hotel in Bedford. Nick
has rigid spine syndrome, one
of the rarest forms of
muscle disease.
• Audrey Hatcher (our very
own Auntie Wainwright), who
manages the Muscular
Dystrophy Campaign charity
shop in South Woodham
Ferrers. Contact Audrey on
01245 329735.
• All who took part and helped
out at the Bury 20 road race on
24 February and The Forest
Challenge, Rendlesham Forest
on 9 March.
8. south eastTHANk YouS• Christ Church Primary School
in Surbiton Surrey held an Art
Day, raising £436.30.
• Bookham and Horsley Inner
Wheel had a supper dance and
raffle, which raised over £2,000.
• Francesca Wright held a car
boot sale and a charity lunch,
both of which raised £515.
• Christine Barker has taken her
fairground organ to various
events throughout year and
collected a total of £245.
• £200 was received from
Redhill Carnival committee.
9. south westTHANk YouS• Freddie Morris aged 11¾, and
friends Ralph Lawson and
Alexander Woolcock, raised
£157.50 on a sponsored cycle
around Dartmoor.
• Mandy Thompson raised
£100 in the Fastnet yacht
race, from which she
unfortunately had to retire
due to bad weather.
• Thanks to the Dreamweavers
Line Dancing Club of Salisbury
for their £210 donation.
• Michael and Hilary Brown
donated over £500 in lieu of
presents to celebrate their
silver wedding anniversary.
• Dairy Crest donated £1,000 to
the Power Pack football team
for wheelchair bumpers.
• Plymouth Mayflower Rotary
Club for marshalling the Pedal
for a Medal cycle ride.
• Gordon Fletcher for raising
over £800 from donations to
view the festive Christmas
lights displayed at his home in
keynsham, Bristol.
GIFT FoR DoNATIoNS Special thanks to Dr Price of
the Exmouth Health Centre
who asked patients and
colleagues to make donations
to Muscular Dystrophy
Campaign Exmouth Branch
instead of buying presents
to mark his retirement from
the practice.
AuLD LANG SYNE Tavistock Muscular Dystrophy
Campaign branch held a
New Year party including a
pastie and pudding tea,
games and music.
10. londonSPoRTING LEGENDS Ex‑Chelsea FC and ex‑Charlton
Athletic FC players took part in
a charity football match to
raise money for the Muscular
Dystrophy Campaign on 2
March. The day included pre‑
match entertainment and a
memorabilia auction.
THANk YouTo all who attended our first
Spirit of Christmas at
Southwark Cathedral, which
was a fantastic evening.
11. home counties northTHANk YouA big thank you from Caroline
kehoe to everyone in the Home
Counties North region for
making her feel so welcome
since she started as Regional
Fundraising Manager. Watch
out for Muscular Dystrophy
Campaign on Facebook in
March, where Caroline will be
advertising events and giving
you an opportunity to see
what’s going on in the North
Home Counties.
fundraising
targetmD 2�
11
For support call 0800 652 6352
fundraising
1. scotlandGREAT SCoTTISH WALkSIn Glasgow on 25 May – with
a choice of 6 or 12 miles, and a
Golden Mile challenge at
Bellahouston Park, Edinburgh on
22 June. “Wee Walks” on various
dates in Dumfries, Inverness,
Aberdeen, Dundee, Perth, Glasgow,
Edinburgh and Galston.
MoNSTER RACELoch Ness on 5 October. Includes
the River Ness 5k and 10k and the
Loch Ness Marathon, for which we
have guaranteed places.
Call Margaret Tooth on 01324
810958 or email scotland@
muscular-dystrophy.org
2. northern ireland and the isle of man
28 MARCH – NoRTHERN IRELAND
BALLoT DRAWTickets £1 each; £1,000 prize.
SWIMMING WITH SHARkS: Dive with sharks in Scotland.
Minimum sponsorship £350.
AuGuST – JAIL 4 BAILHave your boss arrested, cautioned,
handcuffed and led away by the
police. All your boss has to do then
is raise £500 bail money.
Call Joanne Prytherch on
028 9075 1497 or email n-ireland@
muscular-dystrophy.org
3. north west14 JuNE & 20 SEPTEMBER – DIvE
WITH SHARkSLearn scuba‑diving with sharks in
Cheshire. Dive for free if you raise
the minimum sponsorship.
18 MAY – WIRRAL CoASTAL WALk
A leisurely 15 miles.
18 MAY – GREAT MANCHESTER RuNA 10k run through historic
Manchester. Minimum £200
sponorship guarantees a place.
13 JuLY – MANCHESTER To BLACkPooL CYCLE RIDE59‑mile bike ride.
upcoming eventsPlease join in and help to generate valuable funds for the Muscular Dystrophy Campaign
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For more details about events, or if you are interested in organising your own, contact Melinda Polidario on 020 7803 4824 or [email protected]
27 SEPTEMBER – CHESTER GHoST HuNTGet sponsored to stay the night in
a haunted house.
Call Charles Horton on 01244
403012 or email northwest@
muscular-dystrophy.org
4. north east5 oCToBER – BuPA GREAT NoRTH RuN
Last year our fantastic runners
helped raise over £55,000 for
research and care in the world’s
most popular half‑marathon. To
take part this year, call the events
team on 020 7803 4800 or email
For other North East events, call
Glenn Oakes on 02890 751497
or email northeast@muscular-
dystrophy.org
5. west midlands and wales
14 MARCH – DINNER DATE WITH JooLz
Saxophonist Joolz Gianni
entertains in Bewdley. Call Haydn
Bebb on 07807 548968 (mobile)
or 01562 631858. 31 MAY & 16 JuNE – DIvING WITH SHARkS Other dates can be arranged.
JuNE – ABSEILAn abseil is planned in Coventry.
6 JuLY – MALvERN WALkThe next scenic Malvern Walk.
SEPTEMBER – FIREWALkINGFirewalking in Birmingham.
Call Penny Weir on 01432 360373 or
email midlands_wales@muscular-
dystrophy.org
6. east midlandsEAST MIDLANDS SkYDIvES
Opportunities throughout 2008 to
make a giant leap for a good cause.
5 APRIL – LEICESTER BRANCH ANNuAL DISCoCall Stephanie Henderson-Barrett
on 01530 249479 or email
eastmidlands@muscular-
dystrophy.org
7. anglia & bordering counties
19 MAY – oXFoRD ToWN & GoWN
A 10k Fun Run around Oxford’s
historic centre and university parks.
One of our Run for Muscles events.
18 JuLY – BRANDoN FoREST CHALLENGEAn 11‑mile Run and Bike event
through Thetford Forest.
www. runbikeevents.com
Call Anne Jackson on 01787
313913 or email anglia@
muscular-dystrophy.org
8. south east26 oCToBER – BuPA GREAT SouTH RuN
Enjoy this 10‑mile run along the
breezy flat coastline of Portsmouth.
Contact events@muscular-
dystrophy.org
24 APRIL – JAIL 4 BAIL Get arrested at work by the Town
Crier and led away to HMS Warrior
until £500 bail is paid.
4 MAY – BASINGSTokE CANAL RIDE A 32‑mile sponsored ride along the
Basingstoke Canal with transport
back to the start.
10 MAY – JuST WALkA 20km or 60km walk along the
South Downs; www.just-walk.co.uk
Contact Eileen Wellings on 01372
375906 or email southeast@
muscular-dystrophy.org
9. south west25 APRIL – I’M A CoMPANY DIRECToR…
Get Me Out of Here! A
subterranean expedition beneath
the Mendip Hills. No previous
experience is necessary.
18 MAY – RoLL & STRoLLAlong the Camel Trail from Bodmin
to Wadebridge. Suitable for
wheelchairs and buggies.
13 JuLY – ABSEIL THE SEA WALLSAbseil 100ft cliffs at Avon Gorge in
Bristol. Full training given.
14 SEPTEMBER – PEDAL FoR A MEDALThe 17th cycle ride from Plymouth
to Dartmoor National Park. A
choice of 7, 20 or 35 mile routes.
Call Lynne Hodgson on 01752
228128 or email: southwest@
muscular-dystrophy.org
10. london26 MAY – BuPA LoNDoN 10,000 The organisers of the London
Marathon bring you a new 10k
event.
6 JuLY – ASICS BRITISH 10k LoNDoN RuNJoin Olympic athletes and
celebrities in the 8th annual British
10k London Run. Call the events
team on 020 7803 4800 or email
JuNE – THE MIGHTY ABSEIL Are you up to the Challenge?
SEPTEMBER – JuBILEE WALk A fantastic six‑mile walk, suitable
for all the family, around some of
London’s amazing sights.
Call Peter Crampton on 020 7803
4823 or email london@muscular-
dystrophy.org
11. home counties JuNE – DARE To DANGLE Abseil to raise funds.
JuLY – TEDDY BEARS’ PICNIC
At Black Park, Buckinghamshire.
JuLY – DICk TuRPIN CHASECycle from Watford to Windsor.
Call Caroline Kehoe on 01235
524962 or email homecounties@
muscular-dystrophy.org
get involved
Make the Muscular Dystrophy Campaign your workplace charity or remember us when you change a printer cartridge: every little helps
www.muscular-dystrophy.org targetmD �1
in good company
Inside this edition of Target MD, you will find
a form that you might like to pass on to your
child’s school. We aim to build a database
of all the schools in the uk that have a
child with a neuromuscular condition.
This will allow us to offer training, relevant
literature and updates. We also want to
create a schools forum for the exchange of
information and ideas. Information about
individual children will not be kept on the
database and schools will not be permitted
to discuss children without the written
consent of parents/guardians concerned.
Please encourage your child’s school to
participate. Contact Regional Care Advisor
Jane Stein, on 01865 234221 or email
Neuromuscular network for schools
Loose change helps charityMuscular Dystrophy Campaign is delighted
to be working with Virgin Atlantic in April
and May 2008 as part of the company’s
“Change for Children Appeal”. During flights,
the cabin crew make an announcement
encouraging passengers to donate any
loose change – in any currency. So, if you or
anyone you know plans to travel with Virgin
Atlantic during these months, please look
out for the charity and donate!
We would like to say a special thank you
to Christine Ogden, one of our dedicated
members, who championed our cause to
Virgin Atlantic many months ago.
Can you help us?In our efforts to increase
funding from companies
we have found that many
welcome employees’
nominations for their Charity
of the Year schemes. In
2006 Norwich union chose
Muscular Dystrophy Campaign
as their charity of the year,
following an advocation by
employees Andy Bode and
keith Dunsire, both of whom
have sons with Duchenne
muscular dystrophy. Andy
and keith helped organise
a popular armwrestling
competition. If you have
friends and family who
work for the following companies, or if you
would like to become proactively involved in
fundraising for Muscular Dystrophy Campaign,
please get in touch: NM Rothschild, Balfour
Beatty, Alliance & Leicester, Baker Mckenzie,
Gardiner & Theobald, Deloitte & Touche,
Morgan Stanley, Britannia, Jones Lang
LaSalle. Please call a member of the corporate
team on 020 7803 4800. We look forward to
hearing from you.
Printer cartridges raise money for MDCOur new affinity scheme, MyCartridgeTM, means
our supporters can buy replacement printer
cartridges at a competitive price while helping
us. MyCartridgeTM is giving a donation to
MDC for every replacement cartridge bought
through the scheme. There is an extensive range
of laser and inkjet cartridges available, suitable
for most office and home printers. MyCartridgeTM
offers competitive prices with friendly service,
100 percent secure online ordering, fast
delivery options and a no‑quibble product
guarantee. You can check out what’s available
by visiting our website at www.muscular-
dystrophy.org/cartridges.
Alternatively, contact MyCartridgeTM, on 01635
587064, quoting ‘Muscular Dystrophy Campaign’.
Give the details of your printer model and they
will provide you with a competitive quote. It’s
really that simple.
on your marks: Norwich union favoured Muscular Dystrophy
Campaign as their charity of the year
A will to helpThe Muscular Dystrophy Campaign receives
just under £1,000,000 a year from legacies.
This income sustains our current research
projects and care services and helps us
to plan for the future. This is why we are
asking all our supporters to consider
leaving a gift in their will to the Muscular
Dystrophy Campaign. For more information,
contact Ingrid Ambrose on 020 7803 4838;
if you live in Scotland, contact ken Brown
on 01809 511313; or email
Every click countsMuscular Dystrophy Campaign can now
benefit from everyclick.com, an Internet
search engine with a big difference
– it donates half its revenues to charity.
Simply visit www.everyclick.com/
musculardystrophycampaign and make
it your homepage. It
does not cost you
– or us – a penny,
so please use it
whenever you search
the web. Thank you!
For support call 0800 652 6352
ReFusing helP FOR cOnditiOn
QMy son is in his thirties and was diagnosed with Becker muscular dystrophy when he
was nine. I’m worried that he hasn’t seen anyone about his condition for years – he says that as there’s no cure, there’s no point. He’s having more difficulty getting around and is struggling at work. What’s your advice?
a Many adults are in this position and we
would advise them to ask their GP to refer
them to a specialist muscle centre or clinic. We
can provide details of such clinics across the uk.
The fact that there is no cure for muscular
dystrophy at the moment does not mean that
there are not many things that can be done
to help.
From a medical point of view, advice on the
thanks eva!This is Eva’s last page as she has left the
charity, but please continue to send us
your questions by post or email:
Target MD, Muscular Dystrophy Campaign,
61 Southwark Street, London SE1 0HL
(email [email protected])
Muscular Dystrophy Campaign Information and Support Manager Eva Wall answers your questions
askeva
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ask eva
condition and its likely progression, plus the
management of related issues for which there
may be treatment (for example, cardiac
problems), is important. Genetic counselling
may be a concern for anyone planning a family
and accurate advice is essential. At most
specialist clinics, your son would have access to
other professionals with a particular interest in
muscular dystrophy – for example, a Regional
Care Advisor and a physiotherapist. Advice on
exercise, discussing issues with employers,
claiming benefits or adapting a property
might all be available at the clinic and could
be beneficial.
Finally, maintaining contact with a specialist
clinic would enable your son to receive advice
about which health problems are related to his
dystrophy and to keep up to date with the
progress of research.
am i tOO Old tO claim disability living allOwance?
QI’m 64 and I have Inclusion Body Myositis. I’ve been advised to put in a claim for Disability
Living Allowance, but I’m reluctant to do so as I understand DLA stops at 65. I also have a private pension – won’t this be taken into account?
a If you are having difficulty with walking
and/or need assistance with personal care
or with cooking yourself a meal, it’s important
that you put in a claim for DLA before your 65th
birthday. While claims for DLA can be made only
by those under 65, if you are receiving DLA
when you are 65 (or if a claim that is later
successful is made before you are 65), you will
continue to receive DLA indefinitely as long as
you still meet the criteria. After the age of 65 it’s
possible only to claim for Attendance Allowance
(AA), which is less generous. There is no mobility
component to AA so it’s not possible to claim
for problems with getting around unless they
affect your ability to cope with your care needs.
AA is not payable to those who just need
assistance with cooking.
Neither DLA nor AA is means‑tested, so
earnings from private pensions, savings and
employment are not taken into account. If you
are turned down for a benefit you feel you are
entitled to, consider making an appeal – your
local Citizens Advice Bureau should be able
to assist you. For general advice on benefits
you can call the Benefits Enquiry Line on
0800 882 200. If you are in Northern Ireland,
the number is 0800 220 674.
hOw hOsPice can helP kids
QOur son is 11 and has Duchenne muscular dystrophy. People around us keep
suggesting we use the local children’s hospice for respite care but this idea really scares us. Do other families use hospices for children this young?
a Many parents are concerned when the
idea of using a children’s hospice is first
put to them. They picture somewhere dark,
dreary and quiet, with lots of acutely sick
children. The reality is very different. All
children’s hospices are bright, warm places that
offer respite care (often over the course of many
years) to children with conditions such as
Duchenne muscular dystrophy. They also
provide support to the whole family and try to
assist in times of crisis.
Children’s hospices cater for children of all
ages and staff will certainly be familiar with 11
year olds. usually parents and other children can
stay in separate accommodation at the hospice.
Most children love attending their local hospice
for respite care as there is a lot for them to do
and they get one‑to‑one attention. To find your
nearest one, call 0117 989 7820 or see
www.childhospice.org.uk
❏ Thanks for your help! In the last edition of
Target MD, the issue of hiring wheelchair accessible
vehicles was raised. Angela Carter from Reading
rang to advise us of a company called Amvale
Thrifty, which provides such vehicles; call 0845
603 9464. Many thanks to Angela for this – useful
information from our readers is always appreciated.
For support call 0800 652 6352
soapbox
FRIENDS oF CuBAI visit Cuba every year with
the charity Friends of Cuba,
which provides medical
and financial aid (I received
a commendation for my
work last year). I have
befriended a lovely young
woman named Asmara,
who has an undiagnosed
form of muscular
dystrophy (I have FSH).
She is always smiling,
laughing and jolly,
despite her troubles. Her
husband deserted her
last year, her house is sorely in need of repair
and she has little to occupy her time.
A wheelchair or scooter would greatly
improve Asmara’s quality of life. Is there any
Muscular Dystrophy Campaign supporter out
there who could help? If anyone can, or if
star letter THouGHTS FRoM NIGERIAMy two brothers, Esien, 60, and Eyo, 56, were
both diagnosed with muscular dystrophy
around the age of 16, although they do not
know which type. Esien took up employment
with the Nigerian Ports Authority in Lagos,
supporting himself and his siblings as our
father had died. With the chaotic transport
services in Lagos, one should imagine Esien
struggling to board a bus amid a teeming
crowd of able‑bodied commuters. He did this
every working day for nine years, until his legs
could no longer effectively support him.
Leaving employment in Nigeria means
absolute loss of income as there is no social
welfare scheme. For 32 years, Esien has had no
source of livelihood, except through his efforts
in investments and the support of his family.
Eyo has been luckier. After finishing his
education, he was employed in the
Government Coastal Agency, Lagos. He retired
in 1989, on grounds of failing health, and
received a pension of around £40 per month
since then. The paltry sum apart, this stipend is
not paid regularly – sometimes for up to
one year.
No one can recollect any other members of
our family suffering from muscular dystrophy.
We have also not come across any other
people with the condition in Nigeria. We
guess that there must be others just like us,
but in Nigeria there are no programmes
available for the disabled to actualise
themselves and be part of the overall society.
Last year, Esien and Eyo joined a disabled
cooperative association that holds monthly
meetings. Through this association they were
at last able to get motorised wheelchairs from
the state government – for Eyo, it was his first
wheelchair; Esien had previously had a
manual one.
My brothers hope an affordable cure for
their condition will be found within their
lifetime. Reading Target MD keeps us informed
and helps us keep hope alive.
Ekpe Ita
Brother of Esien and Eyo
To read the full letter go to:
www.muscular-dystrophy.org/your_story
feedback
*classifieDs*FoR SALE• Adapted Peugeot Expert 1.9 Diesel
car. Manual controls, silver chassis, low
mileage, S registration. Seats five, plus one
wheelchair user, via rear, ramped access.
£5,000. Contact Mrs E Weston on 020
8856 8828.
• Spectra Plus powered wheelchair with
tilt, five years old, good working order,
£200 ono. Contact Debra England on
01933 385559.
• Guldmann Flexus electric bed. Single,
fully adjustable, pine finish with mattress
and tray. Fully serviced and in very good
condition. £350 ono. Contact Richard
Bright on 01258 472837.
To RENT• Guesthouses and 10 cottages, all of
which are accessible for disabled people:
The Marine Hotel, Aberystwyth. Seafront
hotel with lift to all floors. One bedroom
adapted for wheelchair use; easy access
to the main entrance and all public areas,
including bar, dining room and function
room; disabled toilets on ground floor.
• Llety Ceiro Country Guest House,
Aberystwyth. Award‑winning
accommodation with one bedroom
specially designed for disabled guests;
accessible rooms.
• Bryncarnedd Cottages, Aberystwyth.
Self‑catering accommodation on the
outskirts of Aberystwyth.
Contact Nerys Evans on 01970 612444 or
email [email protected]
If you have equipment you want to
sell, please send your copy for the next
issue by 20 April, 2008.
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We have received two letters that highlight the concerns of people with muscular dystrophy in other parts of the world. Here are extracts from them…
competition Winners• Ronald Ives, Co Durham
• Thomas McCracken, NI
• Ruth Henry, NI
• S Hamilton, West Mids
• Toni Abram, Cheshire
Each win £100 off the total cost of a Virgin
holiday, plus 5 percent off the remaining
total, plus a kodak EasyShare C310 digital
camera. Readers can get 5 percent off any
virgin Holiday by phoning 0871 222
0052 and quoting MDC.
anyone would like to find out more about
Asmara or the work of Friends of Cuba, please
telephone me on 028 437 24746, and ask for
David Allister.
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buyers guide
For support call 0800 652 6352
Clothes designed for wheelchair users and disabled people, or can customise existing clothing. All offer clothes for men and women.
able2WearTel – 0141 774 8000www.able2wear.comTrousers, skirts, tops, waterproof and protective garments for wheelchair users. Some items for children. Catalogue available.
aWear (uk) ltDTel – 0115 953 0439www.awear.org.ukInformation on accessible high-street stores, along with details of independent specialist clothing services.
bassetlaW fashion servicesTel – 01777 860206www.bassetlawfashion services.org.ukBespoke clothing and alteration service for disabled people, at high street prices.
clothing solutions for DisableD peopleTel – 01274 746739www.clothingsolutions.org.ukOffers purchasing advice, a bespoke design service and tailoring of existing clothes for disabled people.
DressabilityTel – 01793 485374www. communigate.co.uk/wilts/dressabilityLocal charity offering alterations and a dressmaking service for disabled children and adults. Home visits in Swindon available.
rolli-moDenTel – 0049 6226 960 203 (English spoken)www.rollicompany.deCasual and formal clothes for wheelchair users, plus alterations and made-to-measure items. Catalogue available.
From design collections to the high
street, it’s clear that most clothes
aren’t designed with wheelchair
users in mind. Sitting in a
wheelchair presents specific
challenges when it comes to
getting dressed: your body is bent
at the knees and waist; your
proportions may change,
becoming thicker at the waist, hips
and thighs; lack of mobility may
make getting into clothes difficult;
and postural problems can make
items less likely to fit well. Some
clothes and styles work better than
others. You may find that clothes
from a particular high‑street store
fit you well, or you might prefer to
buy from a company specialising in
clothes for disabled people. Here’s
our guide to what to look for:
Coats and jackets• Look for short styles, such as
anoraks, blousons or bodywarmers,
which you won’t need to sit on.
Hip‑length jackets with splits at the
side are also good options.
• Double‑ended zips mean you can
open the bottom of a jacket to the
waist, making it more comfortable.
• Capes, ponchos and shawls are
trendy and can be slipped
on easily.
• Specialist suppliers stock coats
and jackets with longer fronts and
short backs for wheelchair users,
plus rain capes and coveralls.
Skirts and dresses• Loose‑fitting, flared and pleated
skirts are the most comfortable
and flattering.
• For a more body‑conscious look,
choose an A‑line skirt – it will give
the appearance of a straighter style
when you’re seated, without
pulling across the hips.
• Slightly longer styles that fall
below the knee often look better
than shorter designs.
• A matching top and skirt can give
the look of a dress but will be
easier to wear.
• Try to find front‑fastening dresses,
which are simpler to put on than
those that do up at the back.
Shirts & tops• Designs with large armholes and
plenty of fabric across the
shoulders and chest will be easier
to slip on.
• Longer tops with side slits from
hem to waist are smart without
being restrictive.
• knits and jersey fabrics will adapt
to your body shape and stretch as
you move.
Trousers• Elasticated waistbands make
dressing easier and can be hidden
by a slightly longer top.
• High waists are back in fashion,
and won’t gape at the back when
you’re sitting in your wheelchair.
• Front pockets are more accessible
than back pockets (these can also
be uncomfortable to sit on).
• Choose longer length styles that
won’t ride up when you sit down.
• Pleat‑front trousers give more
space around the bottom and hips.
• Specialist suppliers make trousers
with a longer back and shorter
front seam for wheelchair users.
Shoes• Velcro‑fastening or slip‑on shoes
are easiest to put on.
• Wide‑fitting styles that finish
below the ankle are most
comfortable.
• Non‑slip soles make standing to
transfer easier.
Shopping• Most high‑street stores have
websites, so you can browse or
even buy online before you go out.
• Many online‑only stores offer a
no‑quibble returns policy, in case
your chosen items don’t fit once
you try them at home.
In the next issue of Target MD, our
Buyers Guide will feature
adapted computers.
specialist suppliers
Fashion isn’t just for able‑bodied people. Here’s what to wear to feel comfortable and look good in a wheelchair and how to find it
clothes & shoesiSto
ckph
oto
For support call 0800 652 6352
need more help?To contact the Muscular Dystrophy Campaign Information Service, call Freephone 0800 652 6352 or email [email protected]. Looking for information, support and advice services? Then log on to www.muscular-dystrophy.org/supportsearch
resources
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BookLETS
p We have an extensive range of
factsheets and other publications
which can be down‑loaded from
our website together with other
useful sources of help. Visit
www.muscular-dystrophy.org.
New Muscular Dystrophy
Campaign factsheets (all free):
p Making breathing easier
p Fibrodysplasia Ossificians
Progressiva (FOP)
p Surgical correction of spinal
deformity in muscular dystrophy
and other neuromuscular disorders
p An introductory guide for families
with a child newly diagnosed with a
neuromuscular condition.
Written by MDC Care Advisors Jane
Stein and Julie Cassell for parents
and/or carers.
www.muscular-dystrophy.org/
publications
p Scope has produced Celine’s
New Splints to help children to
understand their condition
and experiences. www.
childreninthepicture.org.uk
p Carers uk’s booklet New to
caring, on all aspects of caring and
the range of help available. To
obtain a copy, visit www.carersuk.
org or telephone 0845 241 0963
p Disability Alliance has published
a booklet called Claiming Disability
Living Allowance, a self‑help guide
to disabled people aged 16‑64.
Order it on 020 7247 8776 or at
www.disabilityalliance.org
p Water bugs and dragonflies.
Explaining death to children, by
Doris Stickney (Continuum Press).
www.continuumbooks.com
19 April CMT AGM, Coventry.
10 May Myotonic Dystrophy
AGM, Telford
14-15 May Network Meetings and
series of workshops, Leeds
7 June BMD conference and LGMD
network meeting, Brentwood
12 June Launch of Isle of Women
Bookclub and support group, Isle of
Man. Contact Laura Mckeown on 028
9083 9153 or email l.mckeown@
muscular-dystrophy.org
19-21 September Family Fun
Weekend, keilder Water
For further details, contact Peter
Lawson on 020 7803 4800 or email
www.muscular-dystrophy.org
our own website, with
information on conditions, life
experiences, support and news
www.daytrippers.org.uk
Funds group daytrips and events
www.disability.gov.uk
Government information
www.diss.org.uk
Information site from queen
Elizabeth’s Foundation
www.dmchat.org.uk
An online discussion initiative by
the Myotonic Dystrophy Forum
www.dmdtrust.com
Fundraises to fund worldwide
research into muscular dystrophy
www.kidsout.org.uk
Gives grants to make life more fun
for children
ACTIoN DuCHENNE
020 8556 9955
www.actionduchenne.org
ASSoCIATIoN FoR GLYCoGEN
SToRAGE DISEASE
01332 669670
www.agsd.org.uk
BECkER uNITED
www.beckerunited.com
CHILDREN LIvING WITH
INHERITED METABoLIC
DISEASES
0800 652 3181
www.climb.org.uk
CMT uNITED kINGDoM
Helpline: 0800 652 6316 (free)
other queries: 01202 481 161
www.cmt.org.uk
DuCHENNE FAMILY
SuPPoRT GRouP
0870 241 1857
www.dfsg.org.uk
FSH SuPPoRT GRouP
0800 652 4800 (via MDC)
www.fsh-group.org
GBS SuPPoRT GRouP
01529 304615
www.gbs.org.uk
THE INFoRMATIoN PoINT FoR
CENTRoNuCLEAR AND
MYoTuBLAR MYoPATHY
www.centronuclear.org.uk
THE JENNIFER TRuST FoR SPINAL
MuSCuLAR ATRoPHY
0800 975 3100
www.jtsma.org.uk
PuBLICATIoNS uPDATE
uSEFuLWEBSITES
LGMD NETWoRk
01865 234221
MYASTHENIA GRAvIS ASSoC
01332 290219
www.mga-charity.org
MYoSITIS SuPPoRT GRouP
www.myositis.org.uk
MYoToNIC DYSTRoPHY
SuPPoRT GRouP
0115 987 0080
www.mdsguk.org
MYoTuBuLAR TRuST
07813 200 298
www.myotubulartrust.com
NEuRoPATHY TRuST
01270 611828
www.neuropathy-trust.org
NM SuPPoRT GRouP
01968 674998
www.nemaline.org
oPMD SuPPoRT GRouP
0113 275 3048
www.opmdsupport.co.uk
SBMA
01829 771266
www.sbma.org.uk
DIARY DATES 2008
SuPPoRTGRouPS
MuSCuLAR DYSTRoPHY CAMPAIGN
Patron
HRH The Prince Philip,
Duke of Edinburgh, kG kt OM
President Sue Barker, MBE
Hon Life Presidents
Lord Walton of Detchant,
kt TD MD FRCP;
Lord Attenborough of Richmond
upon Thames, kt CBE
Chairman
Professor Martin Bobrow, CBE
vice-chairman keith Rushton